Family Stories
Joshua - 13 Months - London
Joshua has central hypotonia, low muscle tone, global developmental delay and mobility difficulties. Joshua requires a specialist buggy. We applied to Joshua's community nurse. We waited approximately four months for the approval from Newlife. I couldn't take my baby out of the home for the first year which was very crucial because he already had a global delay in development, which...
Daniel - 3 - Nottinghamshire
Daniel has a diagnosis of Athetoid Cerebral Palsy, Hearing and Visual Impairments, Severe Gastro Reflux and Possible autism not yet confirmed. Daniel is on the go all the time either rolling round in circles or crawling or throwing both arms or legs all over the place he has no awareness of danger and will try and pull himself up and then fall backwards and bang his head. He has a very...
Holly - 9 - Hampshire
Holly has quadriplegic cerebral palsy with low central tone, epilepsy and is also visually impaired. Holly requires a specialist seating system. We applied to our local authority. We waited six months for an assessment. We were refused because lots of equipment has been funded for Holly in the past and we were told that no further funds were available. Holly is unable to sit with...
Bryan
Bryan has cerebral palsy and epilepsy. He is unable to sit, stand or support his head fully. He also has regular fits. Bryan requires a special chair. We applied to the Health Service. It took three months to get a quote for the cost of the chair. The health service would not fund it as the chair is to live at Bryanandrsquo;s grandmaandrsquo;s house. Bryanandrsquo;s grandma is the...
Phoebe - 7 - London
Phoebe has rett syndrome, epilepsy, scoliosis, cardiac issues and irregular breathing. Phoebe requires a car seat to support her scoliosis. We applied to NHS and Social Services. No assessment has been done. We were told that car seats are not funded by the PCT or social services in our local area. Phoebe has so many needs. She needs therapies and a lot of equipment. We have two...
Jenna - 6 - Cheltenham
Jenna has downs syndrome, general global delay, congenital dense bi-lateral cataracts and limited mobility. Jenna requires an Advance Mobility Independence Buggy. We applied to Newlife. We would have found it very difficult to take Jenna out and about if Newlife had of been unable to help. Having the buggy has enabled the family to engage in lots more of activities together. I...
Harry - 9 - Essex
Harry has septo-optic dysplasia which means he is registered blind and is a full time wheelchair user. Harry requires an off road/beach wheelchair as his normal wheelchair is preventing him form accessing outdoor activities. Harryandrsquo;s physio informed us that there was no chance of getting funding for this sort of equipment so we did not apply to anyone. Not being able to get...
Warren - 7 - Cambridge
Warren has cerebral palsy and a visual impairment. He also has a shunt to control hydrocephalus. Warren is a wheelchair user and requires 24hour care. Warren needed to upgrade his manual wheelchair. He has been provided with one at the age of 3 and has long outgrown it. He recently tipped out of this chair at school twice. We approached the local hospital wheelchair services who have...
Craig - 6
Craig has Fragile X Syndrome, Autism, ADHD and severe learning difficulties. He is also very active and has severe behaviour problems. Craig requires a special seat to enable him to sit at the table to eat. We applied to Newlife for this equipment. We waited about three weeks. It would have been very difficult for us to raise the funds to purchase the specialist seating ourselves....
Alice - 8 - Norwich
Alice has spastic quadriplegia, eczema and is gastrostomy tube fed. Alice requires a manual and electric wheelchair. I did not apply to wheelchair services as they have no funded for the wheelchair and support which Alice needs. In past experience, monitoring the time from assessment to delivery through wheelchair services would easily take one year. Wheelchair services do not have...
Malkeet - 15 months - London
Malkeet has cerebral palsy and is 80% brain damaged. Malkeet requires a sensory toy and a support seat. Malkeetandrsquo;s OT applied for us. We waited six months for an assessment. These are special items for Malkeet to make his life more enjoyable. As sensory equipment is so expensive, we believe that only a charity would be able to help. I have been a foster carer for the past...
Megan and Courtney - West Midlands
Both sisters have downs syndrome and examphalous major. Megan and Courtney each require a pushchair. We applied to Newlife for this equipment. We waited approximately four to five months. If Newlife hadn't been able to fund the equipment we would have had to purchase the items ourselves. Newlife provided Megan and Courtney with a pushchair each.
Lilly - 2 - South Wales
Lilly has delayed development, a speech sound disorder, a turn in her eye and she also has problems with her legs and feet. Lilly requires a car seat that can fully support her with the function to recline and she requires a pushchair as her condition means that she cannot walk very far. Our key worker suggested that we approach Newlife. We would have had to continue to use Lillyandrsquo;s...
Phillip - 8 - Scotland
Our Ref No: 2017 Phillip has corndia de lange syndrome, he has a short stature, developmental delays, gastrointestinal problems, epilepsy and he cannot walk other than for very short distances. Phillip requires a specialist car seat for his own safety as he has outgrown his original seat. He is also very difficult to manoeuvre in and out of a car seat safely. We spoke to our local...
Dale - 2 - Cornwall
Dale has cerebral palsy, eczema, epilepsy which causes him to have up to 200 fits a day, developmental delay and he also cannot use his limbs at present. Dale requires a garden/indoor swing. We spoke to Daleandrsquo;s Occupational Therapist. It took approximately six months but there was no real assessment. Dale had to be constantly held in the garden or in his pushchair which...
Kerry - 7 - Devon
Kerry has Cerebral Palsy, Microcephaly and Polymicrogyria. All four limbs are affected but more so on the right. Kerry is unable to walk, talk; she is tube fed and is doubly incontinent. Kerry loves to rock and when seated will do this almost constantly. If she is frustrated or excited the rocking is vigorous and she has a tendency to throw herself backwards very forcefully. On the...
Chanelle - 8 - West Midlands
Chanelle has severe epilepsy, learning difficulties and autistic features. She has no verbal communication and no definite diagnosis has been made. Chanelle requires a wheelchair because the one she has is cumbersome and does not fit into a standard family car. This has meant that respite care for Chanelle has been severely reduced. Wheelchair services informed me that there was nothing...
Timothy - 4 - Kent
Timothy has an undiagnosed genetic disorder with symptoms similar to four limb cerebral palsy. Timothy requires an inflatable bed surround as he cannot sleep in a normal bed has he has no sense of spatial awareness. This equipment is needed to keep Timothy safe at night and to allow us respite care as he has outgrown a travel cot. We applied via our local occupational therapist but...
Dawn
Dawn is a mom of two boys with inborn conditions. Joe is 10 and Kelvin 7. Joe has mental impairment, is visually impaired, low muscle tone and asthma. Kelvin has cerebral palsy, social and behavioural difficulties, brain damage, hemiplegia down his left side, mental impairment, autism, visual impairment, hearing loss, protein deficiency and epilepsy. The paediatrician said that if...
Alan - 5 - Leicestershire
Alan has spastic quadriplegia, epilepsy and a VP shunt. It affects all of his daily living skills. Alan is wheelchair dependent and needs stimulation through sensory experiences using specialist equipment such as spotlight and colour wheels, side glow fibre optic spray, visual tracking set, musical positioning chair, mirror chime etc. We applied to our occupational therapy and physiotherapy...
Peter - 11 - Gloucestershire
Peter is 11 years old and has Cerebral Palsy - Spastic Diplegia. Peter can walk short distances but needs a wheelchair when outside of the home. Peter needed a new wheelchair for secondary school as he was unable to self propel his existing NHS wheelchair as it was too heavy and the positioning was wrong. The NHS were unable to fund a new wheelchair - No money! We also needed a lightweight...
Ant - 7 - Halifax
Ant doesnandrsquo;t have a diagnosis for his condition. He is a wheelchair user, fed through a gastrostomy and has no verbal communication. His sight is poor, his hearing over sensitive and he uses incontinence pads. Despite all of this he is a happy little boy. Ant is not safe in the car with a high back or booster seat. He flops to the side and gets out of the seat belt. We need...
Kelsey - 15 - Staffordshire
Kelsey has a diagnosis of cerebral palsy, epilepsy and microcephaly. Kelsey is unable to sleep comfortably because of pain. She turns over and over all night so doesnandrsquo;t get a restful sleep. This makes her really spaced out the next day. We required an electric bed with a specialist mattress. We applied to our O.T. for this equipment. We waited over 18 months for an assessment...
Kylie - 8 - Leicestershire
Kylie has global development delay, limited speech and communicates using sign language. She has poor coordination and immature fine motor skills. She needs help with all aspects of daily life. We needed a trike. BDF provided a grant that meant we could have the trike. Without it we would not have been able to raise the funds by ourselves due to the cost of the trike, so Kylie would...
Rhian - 14 - Wokingham
Rhian has a condition called Prader-Willi Syndrome. This means she has constant hunger and is always looking for food. She has a slow metabolism so it is hard to control her weight. She also has slow learning skills. She needed a trampoline and safety net which BDF bought. The trampoline has given Rhian the chance to exercise daily which is essential for her weight control. It Laos...
Callum - 2 - London
Callum has Cerebral Palsy Spastic Quadriplegia. He is unable to walk, crawl or stand He needed thera togs, it's like a second skin. We were invited by our local hospital to take part in a trial for the thera togs, which we did. We waited several months after the trial to hear if Callum could have it permenantly only then to be told there was no funding. We were told funding had been...
Joy - 11 - Middlesborough
Joy has a very rare Chromosome abnormality. There are only 16 children like Joy in the world. Because of the chromosome problem Joy has she suffers from muscle weakness. Since she was one month old Joy has been getting daily physio. Through perseverance and taking risks Joy is now walking. We have had many problems with equipment through the years. What we find most of the time is...
Amelia - 4 - Northamptonshire
Amelia suffered a stroke before she was born which has resulted in widespread brain damage ?epilepsy, registered blind, global development delay, severe learning difficulties, autistic spectrum disorder and challenging behaviour. She also wears special boots to help with footing posture and a helmet. Amelia refuses to walk when leaving our home and she gets very distressed which makes...
Rosie - Bournemouth
Rosie has cerebral palsy in all 4 limbs. She has to have daily nurses come to our home as she needs total care 24/7. She is unable to move by herself, has very poor sight, is unable to swallow so is gastrostomy fed and has no speech or understanding. Rosie has poor hip growth and movement, so to help with this she has to spend many hours a day in a standing frame. She also goes to a...
Finlay - 4 - West Midlands
Finlay has autistic spectrum disorder. Finlay has delayed speech, learning difficulties and behavioural problems. Finlay needs a pushchair to keep him safe, he has no sense of danger and no road sense. He has many tantrums which lead to him throwing himself around on the floor. We applied to our local wheelchair department at the hospital. We were refused the equipment because of budgets...
Mia - 5 - London
Mia has cerebral palsy. It affects her walking, balance and left side of her body. She uses a walker to aid her mobility In Mia's short life we have needed many adaptations to the house including grab rails and toileting facilities. She also needs a power-wheelchair. We applied to the borough council and other charities. We spoke to social services who said funds were scarce. We waited...
Jason - 6 - North Tyneside
Jason has athetoid cerebral palsy and is unable to sit without a supportive brace. He is a full time wheelchair user. Jason needed a supportive chair with a tray for eating and also for playing. We applied to Jason's social worker and occupational therapist. The assessment was done by the occupational therapist within a short time of asking. We were refused this equipment because there...
Keith
Keith has Angelman syndrome and is physically and mentally disabled and has no speech. We asked for a wheelchair and a buggy and we applied to BDF Newlife for this equipment. We waited 3 weeks for an assessment and we were given a voucher as the standard wheelchair was all that was on offer and that was not suitable. The Buggy we wanted allowed Keith to participate in more outdoor...
Morgan - 11 - Belfast
Morgan has Spina Bifida and hydrocephalus and is unable to walk. He has epilepsy and he has a VP shunt. Morgan needed a downstairs bedroom as he is unable to walk and had to be carried upstairs and had no wheelchair access upstairs. He required furniture downstairs that he could use from wheelchair level We applied to BDF Newlife. The housing executive grant covered ? of building cost...
Isaac - 4 - Cheshire
Isaac has a autistic spectrum disorder with mild dyspraxia and conductive hearing loss. He has behavioural problems, no awareness of danger and he tires easily when walking. He required a specialist buggy with a lap restraint belt and main cover and seat cushion. We were awaiting occupational therapy assessment and we have tried alternative options to fund the equipment but we were...
Hayley - 15 - Leicestershire
Hayley has cerebral Palsy, epilepsy and visual impairment. She is a wheelchair user has learning difficulties and has little to no speech Hayley depends totally on her manual wheelchair but we find them very heavy and difficult to lift and the electric chair is only usable over short distances. We go camping a lot and so space is also essential. Therefore we asked for a buggy. We asked...
Joey - 12 - West Sussex
Joey has cerebral Palsy and is wheelchair bound and so cannot sit or stand unaided. We required a full burnett chair with support and pump. We spoke to the Occupational Therapist and she applied on our behalf We waited a couple of months before we were assessed. The chair hasnz arrived yet but it will open up possibilities for travel and Joey will be supported while out of his wheelchair...
Matin - 4 - Tamworth
Martin has trisomy 8 mosaicism and raynauds. It affects his fine motor skills and movement by hypermobility. He needed a major elite buggy so we applied to the spoke wheel chair service through the physiotherapist. Wheelchair services told us that there could be a wait of up to 12 months for a buggy. We were not refused the item but were told that there could be a long wait before we...
Graham - 14 - Newcastle-upon-Tyne
Graham was born with a brain malformation and has epilepsy, poor co-ordination, and osteoporosis. His condition is degenerative. Graham is 13 stone and has been a full-time wheelchair user since he was 9 years old. Everybody who meets Graham falls in love with him, they say he sparkles. I wouldn't change him for the world but caring for Graham is a 24/7 job. In January when I was carrying...
Kevin - 6 - Wales
Kevin has brain damage from birth. This has caused numerous disabilities including visual, hearing and physical. We needed a hoist to move him from the wheelchair to floor and to changing bed. The hoist needed to be easily transportable for grandparents and holiday use. We applied to our physio for this. We waited 2 months for an assessment We were refused this equipment because we...
Joey
Joey has cerebral palsy, learning difficulties, cannot talk, fed through gasterostomy as cannot swallow and low muscle tone which means he cannot sit up or walk We needed a walking frame for Joey. The physio to us that the Local Authority do not fund this equipment. This was really frustrating for us as Joey so wanted to walk but was unable to as he has no balance. Without the grant...
Scott - 16 - Derbyshire
Scott has Spinal Muscular Atrophy causing weakness in his arm and leg muscles. We required an electric powered wheelchair. We applied to our local wheelchair services in Derbyshire. I canz remember how long we waited for an assessment but it was too long, considering Scott's needs. We were refused the equipment because Scott can walk a few steps. Lack of government funding was given...
Ryan - 6 - Stafford
Ryan is autistic has no speech and has behaviour problems and he wonz walk very far. We asked for a pushchair and so spoke to the physiotherapist and then enquired at Chase hospital in Cannock. We waited 12 months for an assessment to be done and were finally refused because there was no funds available. As a result shopping was a major problem as was going out in general. We brought...
Justin - 1 - Southampton
Justin has West Syndrome (epilepsy and learning difficulty development delay) Eczema and visual impairment. We needed a special chair to aid his head control, as he is low toned and floppy. We also need it so that when he is in the bath I donz have to bend as far.We applied to the Occupational Therapist for the equipment and had to wait 3 months for an assessment. Without BDF Newlife...
Jordan - 17 - Belfast
Jordan has Spina-Bifida Hydrocaphelus.He requires flooring, wheelchair and a desk. We applied to the department of social services and got no help so we applied to BDF Newlife through our social worker. We had to wait 3 months for an assessment but were not given a reasonas as to why we were refused. We were simply told that there was not enough money in the budget. As a result Jordan...
Skye - 3 - North Yorkshire
Skye has a diagnosis of cerebral palsy that affects all 4 limbs so Skye is unable to sit, stand or walk independently. Her speech is also affected. We needed a special car seat to transport Skye to many places we go, for example nursery, hydrotherapy etc. This is an expensive yet very necessary piece of equipment for transferring Skye in and out of a car safely. The car seat would also...
Beth - 9 - Devon
Beth has a diagnosis of Cerebral Palsy and epilepsy. She is wheelchair dependant. No two days seem to be the same for Beth, this effects her electric wheelchair skills. We needed an Indoor/outdoor wheelchair. Beth required an electric chair that could be controlled by an attendant and operated by herself. We applied to Plymouth Disablement Services We originally waited 1 year for...
Luis - 14 - Staffordshire
Luis has a diagnosis of cerebral palsy and asthma. We required an adjustable bed. We applied to various charities across the country, as the NHS does not supply these. But all were declined or we did not hear from them. We were refused because of budgets. We were often told that they couldnz help in that area or people with cerebral palsy. The decision not to fund the bed put more...
Liam - 13 - Hants
Liam has a diagnosis of quadriplegic spastic cerebral palsy, shunted hydrocephalus, epilepsy and asthma He needed a feeding chair and knee blocks for a standing frame. We applied to the local authority for these. We were refused the feeding chair and have been waiting 18 months for knee blocks. We were refused because the occupational therapist is totally incompetent in requesting...
Johnathan - 14 - Lancashire
Johnathan has a diagnosis of cerebral palsy, it affects all four of his limbs. He also has scoliosis and speech problems. Nathan has to use a wheelchair at all times. Over the years we have needed many pieces of equipment for Johnathan. Last year the local authority agreed to pay for adaptations for the house. They have provided a new bath so that Johnathan could use it but we needed...
Connor - 2 - Northampton
Connor has Spina Bifida, Haas Type Syndrome and Arnold Chari Malformation. Connor needs an electric wheelchair or buggy with supports for his legs ?he cannot use a manual wheelchair because of his hand condition. To get this equipment we have applied to the NHS ?O.T. service and Paediatric and Learning Disability Services. Connor had his 1st assessment for this about 9 months ago and...
Louisa - 10 - Leicestershire
Louisa has cerebral palsy and epilepsy. She needs a supportive wheelchair at all times. We needed an all terrain buggy as Louisa's wheelchair is heavy and awkward to push on grass and impossible on gravel and sand. Louisa has a wheelchair that she travels in and needs for everyday use and so she is not entitled to any other kind of mobility equipment. We have 2 other children and...
Declan - 3 - Leeds
Declan has Spina Bifida and Hydrocephalus. He has neuropathic bowel and bladder, Ostegenesis imperfecta. He has no lower limb involvement, he cannot feel from the waist down, because he has no sensation in his legs he doesnz know when he is in danger of fracturing legs. He has no control over bowels and his bladder, he requires catherization. He has a vp shunt in place for his hydrocephalus....
Sonia - 9 - Uttoxeter
Sonia has dystonia and has no mobility at all and is totally reliant on other people for everything, she is unable to talk and has a lack of above normal intelligence. We asked for one armchair and applied to the NHS. We didnz get an assessment as the equipment was not considered essential. We were refused because the equipment is not available on the NHS as it is not considered necessary...
Ewan - 4 - Staffordshire
Ewan has Angelman Syndrome and epilepsy. He cannot stand or walk he has no communication and depends on us for all his needs. Ewan needed a specialist tilt and space buggy. His current wheelchair didnz provide enough support, especially when he was having fits. It was also very hard and uncomfortable and he would slide out of it. We applied to the Wheelchair services, through Ewan's...
Stuart - 6 - Cheltenham
Stuart has Cerebral Palsy, epilepsy and is partially sighted. He has decreasing mobility, increasing fatigue and occurance of seizures. Stuart has sight related issues regarding reading, seeing things on the floor. We asked for a trike, wheelchair and housing adaptations. We applied to social services and through the occupational therapist. For the wheelchair we waited 5 months and...
Sally - 4 - Wolverhampton
Sally has Angelman Syndrome as she has learning difficulties and poor mobility. She is able to crawl but hasnz enough lower body strength to be able to walk. We asked for a medium pacer (walking frame) with a chest prompt and hip positioner.I spoke to Sally's physio and teacher who then wrote to the company who came out to Sally at school to assess her. The assessment was done in only...
Jodie - 2 - Kent
Jodie has Wolf-Hirschhorn syndrome. She is small for her age. She is gastrostomy fed and suffers from persistent vomiting and prolonged seizures. She has global development delay, weak muscle tone and is unable to to sit unaided, is not mobil and cannot communicate. In the beginning we needed a feeding chair for Jodie so that she could be positioned more upright to help with her vomiting...
Jamie - 11 months - Staffordshire
Jamie is moderate/severely deaf. He needs hearing aids to enable him to hear within the normal range of hearing. He needs light and sounds stimulus. Jamie needed light and sound trays and learning equipment, interactive toys with varying volumes. We applied only to BDF Newlife in Cannock and only had to wait two or three weeks for an assessment, they were very prompt. This had a big...
Karen - 18 months - Kent
Karen has patau syndrome. She canz crawl or walk and has low muscle tone and is partially sighted. We asked for a car seat and applied to the physiotherapist and through the Occupational Therapist. We had to wait 3 months for an assessment and were refused the item because the NHS do not supply car seats. This meant simply that we could not take Karen out in the car. If BDF newlife...
Duncan - 13 - Stoke-on-trent
Duncam has Cerebral Palsy and is wheelchair bound. He is unable to wash, dress or feed himself. We asked for a manual wheelchair and applied to the NHS for an assessment. We had to wait 18 months before we got an assessment. They informed us we already had a wheelchair with a CAPS II insert so would not give us a small chair. It was a nuisance on family days out as the chair was so...
Toby - 4 - Hampshire
Toby has Cerebral Palsy (Spastic Diplegia) he is a wheelchair user, has reduced strength in his upper body and legs and is therefore not mobile. He needs supporting and his legs cross over due to hip. He needed a cavalier walker for use at home. This walker is a good design as it supports and seperates his legs. He really needs something to learn to walk and increase his independence...
Simon - 7 - South Derbyshire
Simon has Cerebral Palsy. He cannot walk independently and needs a wheelchair for the outdoors. He used a walking frame in the home. We needed an electric wheelchair. Simon has a manual wheelchair from NHS wheelchair services. He can only use his wheelchair for short distances on level ground due to a lack of strength in his arms and upper body. We applied to physiotherapists and wheelchair...
Richard - 15 - Warrington
Richard has muscular dystrophy, which is a muscle weakness illness. Richard is totally dependent in a electric wheelchair and he is gettign weaker as he gets older. We needed an electric wheelchair, Richard is totally dependent on a chair and this one would mean less pain for him and more independence. Richard's physio did an assessment and we then applied to charities. We only had...
Phillip - 7
Phillip has Mowart Wilson Syndrome, epilepsy, no speech, poor communication, poor fine motor control, unsteady gait. Phillip required a specialist adapted trike with parent steering and braking pole and supported seat so that Phillip can join in cycling with his brother as well as getting good phsiotherapy. It also enables him with little effort to pedal himself and provides mental...
Lucy - 11 - Leicester
Lucy has ADHD and therefore has behavioural problems and bed wetting problems. We required a bed, wardrobe, and flooring, I had bought new bunk beds and within 1 week Lucy had jumped on it and broke it . It was dangerous. She ironed the carpet and put a hole in it. We had to wait 6 months for an assessment and then we were told that there was no-one to provide this item. I felt useless...
Lisa - 12 - Birmingham
Lisa has Sanfilippo Syndrome, this is a degenerative condition and life limiting. We asked for a wheelchair which we needed to recline and have a special seting system to support her head and posture. We applied to wheelchair services for this equipment. We had to wait six months for an assessment and then they couldnz find anything suitable. We did a lot of homework and found the one...
Lauren - 8 - Berkshire
Lauren has arthrogryposis. She is unable to stand or walk with muscle weakness and contractures of main limbs. She uses a powered wheelchair. We required a wheelchair accessible exercise machine. We applied to four local charities via social services who raised £700 over 4 months. This left £1920 to find. BDF was the quickest and least bureaucratic of all the charities we have dealt...
Kieran - 8
Kieran has cerebral Palsy and spastic diplega. He required a rolator walking frame and so we applied to the NHS for the equipment. We were refused because there was a lack of funding to the home loans service run by the local health authority. The PCT in my area fund the home loans services. I have complained to the commisionerof the PCT by e-mail and a letter. I have not even had a...
Jessica - 3 - Southamton
Jessica was born with a deletion in her 6q chromosome, which has caused her to have quite complex health needs. Her syndrome is a very rare one. Her condition is called a dandy walker variant which has caused her to have severe development problems. She has trouble with balance and co-ordination, respiratory problems, floppy airways, cardiac problems, she suffers from reflex and has...
Harvey - 14 - Plymouth
Harvey has severe global delays, autism, learning difficulties and behavioural problems. We asked for a buggy to be provided and applied to social services (mobility) for the equipment. We had to wait 3 months for an assessment We were refused this item because Harvey can walk and it was decided that he didnz need a buggy or wheelchair to get around even though they provided his original...
Edward - Newcastle-under-Lyme
Edward is very fragile, he has Goldenhars Syndrome and cant walk, talk and has to have liquidised feeding. We required a bed, Edward needs to be in a large cot bed with high sides for his own safety. We applied to social services, physiotherapists, and the Primary Care Trust. I didnz get an assessment, I had to pay privately via the R.A.F benevolent fund. They said Edward had no medical...
Chelsea - 10 Months - Mitcham
Chelsea has spinal muscular atrophy type 1. This is a terminal illness. We asked for a shed to store specialist equipment, travel seat specialist pram, tumble form, bath seat and moses basket. We applied to the early support service who helped us to fill in the application form for a shed. We waited for only two weeks before we were assessed. Our local occupational therapy service do...
Charlotte - 3 - Stoke-on-trent
Charlotte has cerebral Palsey and has problems with her legs and arms. We required an adjustable bed and requested one. We applied to the disability resource team We had to wait 8 weeks for an assessment. We were refused this item because it is not supplied by social services. It made life more difficult as a single parent I was having to move her manually quite a lot and doing a lot...
Caitlin - 3 - Evesham, Worcestershire
Caitlin has Cerebral Palsy and it affects the bottom half of her legs. We required a shed to store all of the items and so my daughterandrsquo;s social worker applied to newlife for us. It took about 2 months before we got an assessment. Without BDF Newlife the equipment would have had to stay in the house and there would be not a lot of room. They helped us make space in the house...
Angela - 9 - Boosbeck
Angela's condition is severe disabling Cerebral Palsy spastic quadriplegia. We asked for a Hospital type bed and we applied to learning disabilities service in Middlesbrough but we had to wait just over 2 months for an assessment. Angela was turned down because of a new criteria which she did not qualify for. It makes life very difficult and puts a lot of stress on myself as the bed...
Louise - 5 - Devon
Louise has a condition known as MPS or Sanfalipo Syndrome. Louise has a genetic disorder, which causes her brain damage. She is unable to communicate in any way. We asked for a special bed called a Bear Huggzy, which prevents her from hurting herself. It is made of soft but strong materials. We applied to the occupational therapist and they found out about the bed from the children's...
Fiona - 2 - West Midlands
Fiona is gastorostomy fed, has West Syndrome and congenital heart disease. Fiona cannot sit up unaided so we needed special chairs, pushchairs to support her in the home and also out of the house. We spoke to the physiotherapist and social worker but no one had the funds for these items. We were told to fund it ourselves as she was to small/young for a wheelchair. We were not assessed...
Mark - 17 - Worthing, West Sussex
Mark has thinning of the corpus callosum, epilepsy and cerebral Palsy affecting four limbs, He also has scoliosis, neuropathic bladder, is registered blind, patella alta and a connective tissue disorder. He has a life limiting condition Mark required safeside sheets to fit the safe side cot surrounds. We applied to the Primary Health care trust, social services and district nurses....
Paul - 6 - West Midlands
Paul has severe developmental delay, behavioural problems and ASD. Paul required a cot bed. We contacted the occupational therapist and the school. They would not give us an assessment as they said they could not supply what we needed. They said that it was not a medical need just a behavioural problem. Paul would not sleep through the night, he would wake up screaming, get out of...
Michelle - 3 - Leicestershire
Michelle has severe global development delay and epilepsy. She has no self help skills / communication. We asked for a supportive pushchair. We applied to wheelchair services. We were advised there was an 8 month waiting list for just the assessment, plus additional time to reach a decision, then to order and supply. We were very concerned that Michelle's spine and posture would worsen...
Nigel - 9 - West Midlands
Nigel is diagnosed with Soto's Syndrome, epilepsy, autism, global development delay. Nigel has many medical and mental problems. He needs an epilepsy monitor to alert us at night to his seizures now he has an adjacent room to ours but we donz get any sleep as we have to keep going in to him. He also needed a tricycle so Nigel can enjoy some freedom with his peers. We are still trying...
Graham - 3 - Essex
Graham has Cockayne syndrome, he has global development delay is visually impaired, no mobility and is prone to serious chest infections. The condition is life limiting and Graham has to be fed via gastrostomy. We asked for a specialist bed and sensory equipment. We applied through the occupational therapist and the physio. Graham is nearly four and was still sleeping in his baby cot,...
Josh - 6 - Suffolk
Josh has Quadriplegic Cerebral Palsy. We required an electric standing frame. We spoke to Josh's physio who sorted everything out. Josh's physio contacted BDF Newlife as Josh would not have had the equipment provided anywhere else. Josh needed this equipment as it is important for him to stand. Without this stand his muscles in his legs and posture would deteriorate. If we didnz get...
Ian - 5 - West Midlands
Ian has cerebral Palsy (Athetoid) This means that there is constant body movement, he cannot sit or stand unaided. The car seat we had was not able to hold him securely. We needed a special car seat with abductors to stop Ian crossing his legs and extending his body. He also needed side head supports and a swivel base as it was near impossible to get him into a n!ormal carseat? Our...
Sophie - 5 - Staffordshire
Sophie has a severe neuro-development problems causing severe learning difficulties, absent speech, hyperactivity and she also has no sense of danger. Sophie required pushchair accessories and a low-level bed/bedding. We had to wait 4 weeks for an assessment from wheelchair services. However, wheelchair services were unable to provide pushchair accessories due to no funds. We were...
David - 16 - Staffordshire
David has spinal muscular atrophy. David needs a wheelchair enabling him to lie down. We applied to wheelchair services for this equipment. We had to wait 3 months for an assessment. We were refused this item firstly because they had no idea of what was needed and secondly because the item was too expensive. As a result David was house and bed bound for twelve months. Without BDF David...
Mark - 10 - N. Ireland
Mark has autism, asthma and ADD. This effects all aspects his education and development. We asked for computer and software. We only applied to BDF. In Northern Ireland the only help was from International Childcare fund and they were the only charity which offered help. They came under investigation for fraud etc 2004 - 2005 They took 3 years for assessment and diagnosis for Mark(medical)....
Angus - 7 - Cumbria
Angus has Cerebral Palsy and epilepsy Angus requires a bed ?a special system to hold him in correct position to avoid need for further surgery. We waited 2-3 months for an assessment. We were advised by the physio that there was no NHS funding and to apply at BDF Newlife. If we had not been able to get this grant it would have had enormous impact on Angus and therefore the rest of...
Scott - 5 - West Yorkshire
Scott has Cerebral Palsy, he is registered blind and has epilepsy. He needs constant 24/7 care. We needed a shed for our son. We only applied to BDF newlife because nobody seems think storage is possible. Without the shed the house would have been so full of Scott's equipment, we wouldnz be able to move.It provided space in the house so that we can move around. We cant thank BDF Newlife...
Samuel - 4 - Bristol
Samuel has a unique chromosome disorder and has very delayed development. Samuel cannot talk, walk or stand and has vision and hearing problems, seizures and recurrent chest infections. We required a changing table for Samuel's bedroom, which is height adjustable so he can climb on it at floor level and then he raised up to be dressed etc and also access his bed. We applied to the Occupational...
Seamus - 9 - Ulster
Seamus has Spina Bifida and is wheelchair dependent. Seamus required a light weight wheelchair. I applied to the NHS for this equipment. We had to wait 3 weeks for the assessment. We could not get the wheelchair we needed because the chairs that they provided were very heavy and Seamus gets tired pushing himself. As a wheelchair user myself the other lads had to do all the lifting...
Melvin - 4 - Scotland
Melvin has spinal muscular atrophy which affects all of his muscles so he can only get around in a wheelchair. We asked for a powered wheelchair as he canz self propel and as he is getting older he needs his independence as he starts primary school soon. We applied to wheelchair services via the occupational therapist. We had to wait nearly two years for the assesment from diagnosis...
Jeremy - 12 - Northeast
Jeremy has cerebral palsy and cannot do anything for himself, he is none weight baring plus Jeremy has myclonic epilepsy. Jeremy required a belluno bed with siderails, bumpers and a mattress. We applied to north Tyneside children's services and many other charities. We had to wait about 6 weeks with North Tyneside. We were refused this item because our local social services donz supply...
James - 9 - Dorset
James has Downs syndrome and has arthritis of the hip. James required a tricycle to strengthen the hip and speech therapy. We applied through the physiotherapist and the speech therapist. We were loaned a tricycle but James has still not been assessed for speech therapy. We have not yet been refused a tricycle but there are not enough resources for speech therapy. Without the tricycle...
Steven - 3 - Lancashire
Steven has Spina bifida and hydrocephalus. This has a big impact on his physical development. He has difficulty in sitting, standing, walks only with assistance and a walking frame for short distances indoors, balance and co-ordination, fatigue and stamina are a huge issue. His poor muscle tone in his lower back and pelvic area makes sitting without support very difficult. He needs a...
Sandy - 3 - Shropshire
Sandy has severe myclonic epilepsy and delayed mental and physical development. She is unable to stand, walk or talk. She cannot perform any task independently. Sandy requires a mini walker to enable her to be not only be upright but also to get about independently. The walker needed to have support for Sandy and was therefore custom made for her. Our Physiotherapist applied to both...
Rosie - 2 - Worcestershire
Rosie has cerebral palsy, epilepsy, microcephaly. Rosie cannot walk, sit or stand unaided. Rosie required a car seat for added support, standing frame and bed for support. We spoke to the occupational therapist and the physio who said the bed wouldnz be provided. We had to wait 6 months for an assessment. We were told that social services wouldnz provide it due to budgets and a lack...
Lee - 8 - Shropshire
Lee has severe cerebral Palsy, spastic quadriplegic, epilepsy and is autistic. We asked for a thera live exercise machine which is an active/passive exercise machine which exercises the legs and arms helping with circulation and general health and fitness. We spoke to our Physiotherapist who did an assessment and told us the equipment was suitable for Lee and would help with his physical...
Harry - 11 - Leicestershire
Harry has a degenerate brain disorder, epilepsy, he is blind, terminally ill and relies completely on us for his needs. He canz talk or walk and uses a wheelchair. Harry needed a portable pushchair so we could get in and out of the car easily, which is also comfortable for him, so that he can lie down or sit down and will last him. We applied to social services for this equipment. We...
Phil - 18 - Stoke-On-Trent
Phil has cerebral Palsy, spastic diplegia and is unable to stand or walk. Phil required a lightweight wheelchair. We applied to our Primary care trust wheelchair service. We are still waiting for an assesment(it has been over 3 months to date.) We have already been told that customised lightweight wheelchairs are not available. This decision is really frustrating. I have been informed...
Tony - 20 - Stoke-On-Trent
Tony has agenesis of the corpus callosium, severe learning difficulties, communication difficulties, autism and osteoporosis. In the past Tony has required a communication aid, a wheelchair, extra supports for the wheelchair when he has his leg/legs in plaster, a rollator, special bedding, car harness, structural alterations to the house. We have asked health and social services to...
Susie - 8 - Dorset
Susie was born prematurely and has Cerebral Palsy. She has frequent chest infections and has no independence i.e canz sit/walk/talk We asked for a wheelchair/buggy, toilet seat, bath chair, arm/leg splint, standing frame, everyday chair. For this equipment, we have asked our occupational therapist, wheelchair clinic and various other charities. Some assessments are quicker than others....
Liam - 8 - Nottinghamshire
Liam has been diagnosed with Autism and has sensory perception difficulties which leads to challenging behaviour. Following an assessment from an occupational therapist specialising in sensory modulation, it was confirmed that Liam needs particular movement to help calm him and therefore improve his quality of life and behaviour. We applied for this equipment to occupational therapy...
Grace - 7 - Nottinghamshire
Grace has been diagnosed with Quadriplegic Cerebral Palsy and deafness. She has poor control over her body, no speech and needs total care. Grace required a feeder seat and wedge with mobile base and tray. We applied to health and social services for these. Grace's step mom is an Occupational Therapist so she worked with her official OT, which meant that the assessment period wasnz...
Chris - 2 - Surrey
Chris has Cerebral Palsy, right sided hemiplegia, limited use if right leg, very stiff right arm and very limited mobility and self help skills. Chris required a swivel car seat. He is very big and heavy, it is very difficult to lift him in and out of a normal car seat because of his stiffness. I would bang his head everytime and it was stopping us from going out. We couldnz find any...
Ben - 17 - Middlesex
Ben is mentally and physically disabled. He has fits and blindness. He has progressive Kyphoscoliosis with diminishing lung, severe limb contractures and recurrent respiratory infections Ben required a ripple bed and mattress. We applied to social services, children with disabilities and the Childrens community nursing team. We were told by Ben's consultant paediatrician in May 2004...
Lucy - 2 - Eastbourne
Lucy has a diagnosis of brain abnormality, large ventricles, brain migration, blind, epilepsy, cerebral palsy, severe developmental delay and learning difficulties We required several items, all these items we have now but we had to wait months for and also apply to several charities. These items included special wheelchair(kimber spring buggy), kapps 2 chair, bath seat, special mattress,...
A Mother - South West
I would like to say It's time families stopped having to jump through hoops in order to get equipment and it's also time that professionals with bad attitudes were disciplined - complaints systems are a joke! My daughter has a great wheelchair but we had to locate it ?O.T.s knew it existed but didn't tell us about it - the company that makes it can't get a foot in the door to do a demo...
Tim - 3 - Birmingham
Tim has Cerebral Palsy. This affects his muscle tone in all four limbs and his posture. Tim cannot walk or sit unaided. This means he needs special seating for his posture i.e car seat and buggy. He also required a sleep system. The Physio put in a request to wheelchair services but after seeing the seating we decided to sort out privately. Wheelchair services would fund ?1000 for the...
Robert - 3 - Surrey
Robert has Cerebral Palsy and Scoliosis. Robert needs 24 hour postural management so needed a sleeping system This system was needed to keep his spine straight during the night. Robert's physio assessed his needs and applied to social services. The physio assessment was done quickly but social services wouldn't pay for the necessary item. We were told Social Services will not fund a...
Rachel - 13 - Co. Durham
Rachel has been diagnosed with Ataxia Telangictasia (AT) a neuro degenerative disorder which affects balance, co-ordination and fine and gross skills. She uses a wheelchair . Rachel required a Leckey supportive chair. Rachel needs her body supported all day and when she eats her meal and does her homework etc this chair is ideal. She also has Scoliosis so her back needs supporting a...
Michael - 8 - Cumbria
Michael has severe Cerebral Palsy, is partially sighted and has epilepsy. Michael requires adult care 24/7 and is unable to sit, stand, speak or feed himself We required an armchair with support. This would be a comfortable place for Michael, which still offers support. He used to cry when in his wheelchair for more than a few hours. We applied to social services for this piece of equipment....
James - 15 - Gloucestershire
James has been diagnosed with a genetic condition but also has heart defects, short stature, deafness, MLD, overactive thyroid and asthma. James needed a Closi Mat toilet due to soiling and the fact that because he has short arm length and poor muscle tone he was unable to clean himself. We put forward our application for this to the local social services. We had to wait about 4 months...
Helen - 13 - Co.Durham
Helen has epilepsy and Quadriplegic Cerebal Palsy We needed a bed which is electrically operated, which therefore moves up and down and tilts. Helen also required a Hydro Spa sytem for the Bath. We applied to the Council via an Occupational Therapist. We had to wait twelve months for an assessment. They said that she did not require the items, despite the advice of Helen's physio who...
Ellie - 15 - Cheshire
Ellie has been diagnosed with Cerebral Palsy Quadraplegia, is unable to walk and is confined to a wheelchair Eliie required an indoor power chair. To get this for her we applied to the NHS. We were told by the NHS that we could not have a further chair since we already had a manual one. No extra chairs could be provided. We have needed to have an extension built since Sarah is 15 years...
Danny - 17 - Leicestershire
Danny has Autism and has severe learning difficulties, mobility problems and has had a mental health breakdown. He is tired all of the time and his severe panic attacks mean that we are unable to go out. Danny required a Wheelchair. We applied to the social services department for this piece of equipment. The waiting list for this was over 18 months long. They would put Danny's name...
Andrew - 14 - Birmingham
Andrew has been diagnosed with Downs Syndrome Andrew required Leisure activity funding, ie a holiday, trips out, clothing, play equipment (Due to ripping clothing, breaking play equipment) We applied to various charities and councillors The reason that we were refused was because of funding. This decision caused added stress as a result of the waiting. BDF helped provide outdoor equipment....
Amy - 9 - Staffordshire
Amy has Cerebal Palsy, Epilepsy, Turner syndrome and poor vision. Amy uses a wheelchair all the time. She also has a special seating system for feeding, bathing and for in the car. Amy needs a Wheelchair all the time, she can not sit, walk, talk or see very well. She also needs a specially adapted bath and bed along with a lift and a hoist. A physiotherapist did an assessment, and...
Adolfo - 6 - West Midlands
Adolfo has cerebal Palsy and epilepsy and wears glasses for a Stigmatism as well as being long sighted. Adolfo's global development is delayed therefore he has learning difficulties and mobility is restricted. We require many items to help Adolfo around the home. The item we asked for from BDF Newlife was a walker We spoke to Physiotherapists four years ago and we were provided with...
Freddie - 4 - South England
Freddie was born with a genetic condition that has left him with a heart defect, chronic lung damage, gastrostomy fed, deaf, visually impaired, learning difficulties, unable to walk or talk, poor muscle tone, poor growth, asthma, eczema, and a multitude of other problems. Freddie needed an electric cot-bed. The O.T. applied to the NHS / Social care continuing care fund and several other...
David - 4 - Berkshire
David has a diagnosis of Spinal Muscular Atrophy II - severe muscle weakness, has never stood / crawled , will become weaker as body becomes heavier. At risk from chest infections, the condition terminal David needed a Powered wheel chair. We applied to the Wheelchair clinic for this. To get an assesment we waited a total of 12 months We were refused because the NHS do not fund powered...
Jamie - 13 - Cornwall
Jamie has a diagnosis of Duchenne Muscular Dystrophy which is a degenerative condition. My son is a full time powerchair user. Jamie required a portable hoist. For this we applied to our O.T. and social services. We were told that they do not issue them. You have to hire one or self fund through fundraising, I am too tired to consider doing this. It seems to me that disabled children...
Harry - 13 - South East England
Harry has a diagnosis of Duchenne Muscular Dystrophy. Harry uses a wheelchair all the time. He goes to a special needs school and is reliant on carers for all moving and personal care. Harry has recently had spinal surgery and now has rods the full length of his back to keep him sitting upright. He has not been able to raise his arms for sometime now but before the surgery he could...
Hope - 13 - Sussex
Hope has gastric abnormalities, is registered blind, epileptic and quadriplegic cerebral palsy. Hope likes to do everything her friends do but she canz. She cries a lot about this, it breaks my heart. Over the years we have needed quite a lot of equipment for Hope. My husband is in the armed forces so I have done most of it by myself. A few years ago we needed to extend our house so...
Ashraf - 17 - Manchester
Ashraf has severe learning and behavioural difficulties. He has a very limited understanding of the world around him and communicates through signs, grunts and violence. Ashraf lives at home with me, his mother, and his younger brothers and sisters. Living with a child with this kind of disability has had a huge impact on the family. All of the family fear his violent attacks and now...
Lucie - 15 - Staffordshire
Lucy has a diagnosis of Turner Syndrome which leaves her with learning difficulties, very small for her age and other medical problems Lucy needed a new stereo and carpet. We applied to the DHSS. We were told that we could not have them because they were not a priority This decision left us very upset as people had got grants from the DHSS for the same thing but we were refused. They...
Robbie - 7 - Nottinghamshire
Robbie is diagnosed with cerebral palsy, epilepsy and has reflux problems. Robbie needed a car seat. We applied through our occupational therapist to get this equipment. After waiting 4-6 weeks for an assessment, we were told on this occasion they could not help. This decision meant that Robbie couldnz go out in the car as a family, so it made it very awkward when the family went...
Sura - 9 - London
Sura has a diagnosis of Noonan's Syndrome and Eczema. Sura has to be fed throughout the night and during the day. We moved house last year and Sura did not have a bed for several weeks. For Sura we needed a proper bed which is essential for her safety at night because of her feeding. Sura had to spend several weeks sleeping on the floor which posed potential risks: She could have kicked...
Billy and Jack - 8 and 5 - West Midlands
Both boys have a diagnosis of Sanfilippo Syndrome, a life limiting genetic disease affecting the brain and central nervous system. For the boys we needed 2 adaptable strollers to control them during hyperactive episodes and as a safety measure when they are like this. To get the equipment we applied to wheelchair services through our occupational therapist. We waited about 4 months...
Cecilia - 9 - South West England
Cecilia had a diagnosis of Spina Bifida and hydrocephalus, lack of mobility and toileting problems. Cecilia required a PowerTrike. We didnz ask our local health authority for this because it would not be provided (seen as a nice to have) so we applied to local and national charities BDF Newlife Helped fund the purchase of a PowerTrike, total cost ?1995. If BDF Newlife had been unable...
Joe - 3 - Nottinghamshire
Joe has Cortical Blindness, Global development delay and severe epilepsy. He uses a wheelchair all the time and needs extra support to sit. Joe needs extra support while sitting and is getting quite heavy, a high support car seat with a turntable for easy access is an ideal solution. We spoke to our social services occupational therapist about getting the car seat, we were not offered...
Jenny - 14 - West Midlands
Jenny has a diagnosis of manifesting carrier Duchenne Muscular Dystrophy. She is unable to weight bare. Jenny needed an adjustable bed to give her more independence and to take the strain off us and to help her lie comfortable. To get this bed we asked our physio to apply to social services but there was a long waiting list and the criteria was very strict. We waited over 12 months...
James - 13 - Worcestershire
ames has a diagnosis of cerebral palsy and epilepsy. He needed a height adjustable chair for easier hoisting and it also reclines. It also means that with this chair he is at the right height for us to see to him as mum has a bad back too! Social services had always provided a home chair but this time they refused due to lack of finances. The physio tried but with no luck. Lack of...
Harvey - 15 months - London
Harvey has a diagnosis of Lissencephaly Type 1, Severe delay in mental and motor development. Harvey is always extending his body backwards which is causing the muscles on one side of his body to be tighter than the other. He currently has scoliosis (curved spine) and needs a Jenx Drema to help remedy this. My physio had tried several of their usual contacts to get this for Harvey....
Sarah - 15 - Staffordshire
Sarah has a diagnosis of Down's Syndrome. Sarah has a taxi to and from school, she could not travel alone. Sarah needed a special bicycle, she could never join in with the family cycling as she had neither control or strength so someone had to stay at home. We were desperate for her to lose weight too. The bike was specially adapted for her needs and would have cost us 800.00 We applied...
Olivia - 7 - West Midlands
Olivia is 7 years old and diagnosed with Rett Syndrome, Olivia is a wheelchair user and has severe epilepsy, non verbal, severe learning disability. Olivia required a Specialist bed, high and padded sides needed to stop Livvy climbing out or hurting herself if she seizures. We applied to Occupational therapy, Health For an assessment we waited Over 12 months, before they eventually...
Liam - 8 - West Midlands
Liam is aged 8 years old and has a diagnosis of Posterior Urethral Valves, chronic renal failure and has a procedure to remove urine due to bladder abnormality. He required bed linen, protective coverings for mattress, pillow etc, pyjamas and a rain cover for the wheelchair. We applied to the local council - children with disabilities team (only offered incontinence pads or pants)...
Laura - 3 - West Yorkshire
Our daughter is 3 years old and is diagnosed with cerebral palsy- she is unable to support herself with sitting/standing etc. needs alot of equipment to support her We required seating for nursery, car seat The nursery tried to get funding for equipment but were refused and the hospital trust would only supply the one for home but it was too large and heavy to transport to nursery...
Hassan - 4 - Hampshire
Hassan is 4 years old and has suffered brain damage - Unknown how and when - Hassan has complex disabilities - He has global development delay, is unable sit by himself or stand. Evolving cerebral palsy and epilepsy. Hassan is a baby which needs continuous care and support. Hassan goes to a Special Needs School in Southampton, called Rosewood or Bradbury Centre. The school is wonderful...
Aaron - 5 - Essex
Aaron has severe Autism ADHD, he is a non verbal child that needs 24/7 care. His behaviour is very unpredicatable which makes daily life intresting to say the least. We required a Large sized Buggy. We applied to occupational therapy social services. For an assesment we waited approx 9 months When we were refused the equioment they said that becasue Aaron's disability was not a physical...
Daniel - 3 - Nottinghamshire
Daniel has a diagnosis of Athetoid Cerebral Palsy, Hearing and Visual Impairments, Severe Gastro Reflux and Possible autism not yet confirmed. Daniel is on the go all the time either rolling round in circles or crawling or throwing both arms or legs all over the place he has no awareness of danger and will try and pull himself up and then fall backwards and bang his head. He has a very...
Benjamin - 13 - Staffordshire
Ben was diagnosed with Hunter's Syndrome, he died last year when he was 13. In the last 3 and 1/2 years of his life Ben lost the ability to see, walk, talk and eat solids. When Ben died he was incontinent and almost completely deaf. Looking after Ben was a 24 hour a day job for me. We needed a bedroom extension, lift into the bedroom, hoist, car seat and the curb dropping outside of...
Elijah - 6 - South
Elijah has Duchenne Muscular Dystrophy which is a debilitating muscle wasting disease. He splits his time in two separate counties as his parents are now divorced and live quite some distance apart. We needed a hoist and housing adaptations for Elijah when he is at his dadandrsquo;s house. Elijahandrsquo;s condition has deteriorated and he is now totally wheelchair bound. We applied...
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