RARE DISEASE DAY: RARE STILL GET CARE FROM NEWLIFE
Having a child with a rare condition can bring its own complications. Not only is the family struggling to manage the child's complex medical needs on a day to day basis, they often have no diagnosis or struggle to find information and support specific to their child's condition.
One place the family of a child who has a rare disease can turn to is Newlife. Not only can we help with providing equipment, through grants and emergency loans, there are Newlife Nurses available to help families get the information and support they need.
Newlife Consultant Nurse, Karen Dobson, said: "We regularly hear from families who don't know where to turn to next because their child has complex needs, but no diagnosis. This means that accessing services is even more difficult and families are often left to fend for themselves."
Available online through Newlife chat or on the end of a phone, Newlife Nurses can listen, explain and sign post to other services where necessary. When a prognosis is terminal, there is also the comfort capsule service which provides carefully chosen items in each one which aims to help families make the most of their precious time with their child, creating special memories they can treasure forever.
The family of Patrick Langford from Nottinghamshire turned to Newlife when they were in real need.
Patrick, who is almost two years old, has the rare brain condition Pontine Tegmental Cap Dysplasia. This condition is so rare that it is uncertain what the future holds for him.
Patrick has global developmental delay, seizures and hearing loss. He has only one kidney, which doesn't work properly, and no nerves in his face which means he will often bite his lips without realising what he is doing.
Mum Vicky said: "We were so excited when we found out I was pregnant - and with twins; but at the 20 week scan we found out there was something wrong with one of the babies. Twin one - Freddie - was OK - but then as they checked twin two - Patrick - they noticed he had cysts on his kidney and carried out further investigations to check his brain. The back of his brain had stopped growing, and as the weeks went by they found more things wrong."
She added: "We were offered a termination, but we also had Freddie to think about." Vicky and partner Dean were told about Newlife by the family's Barnardo's support worker. As well as a buggy to accommodate all of Patrick's vital emergency equipment and a specialist P-Pod seat to help keep him comfortable, we were able to provide a Comfort Capsule.
Created by an expert team, Comfort Capsules include a soft blanket, a supportive V-pillow, hand print maker, camera and digital photo frame as well as a portable DVD player - giving families the opportunity to make and preserve memories.
Vicky said: "The digital camera has been brilliant for us - we are taking as many pictures as possible of Patrick and Freddie, together with our other children. We also have quite a lot of hospital stays with Patrick so the DVD player has been really helpful at distracting him when we are there.
"He loves the teddy bear - Patrick doesn't really like to be held but he does love contact; the weight of the bear on his tummy feels like he is being touched and helps distract him from discomfort. Patrick and Freddie have used the handprint maker together - we are trying to make as many memories of the two of them together as we possibly can for our family memory box."
There are now one million disabled children in the UK and there are more families turning to us than ever before. Newlife is the largest non-statutory provider of specialist equipment for children with disabilities and terminal illness and the charity continues to help children across the country, based solely on their need, regardless of their condition.
Pictured: Patrick Langford