Every day in the UK children become disabled, are diagnosed with life limiting conditions or become terminally ill.

We now have more disabled children in the UK than ever before. These disabilities are often due to:

  • Birth defect conditions and malformations
  • Premature birth related conditions
  • Accidents and injury
  • Cancers and acquired disorders
  • Serious infections

The good news is that, thanks to medical research, technology and the skills of our healthcare and welfare professions, we now routinely save the lives of babies and children who just a few years ago would have died. That’s wonderful news and but further research is needed, not only to continue to challenge loss of life but also to challenge the lasting effects of these conditions. That’s why Newlife funds vital medical research to help understand, prevent and treat such conditions. Without continued research we will not be able to improve child health and save children from facing loss of ability and inevitably loss of their lives.

So, we now save more lives, but sadly many of these babies and children go on to be affected by short or long term disability or illness, so tragically their lives are prematurely shortened as a result. This is when Newlife Nurses become the key support and contact point for families seeking to understand, adjust, prepare, and care for their child. The issues around children’s illness are complex, children are not ‘little adults’. Their families are often challenged to respond to these situations so they need a service that is on their side and one they can trust. That is why Newlife Nurses man our national Helpline so families can rely on their experience and professionalism.

The effects of many such disabilities can be reduced or minimised by the provision of equipment. But the provision of such equipment is often hit and miss nationally, with statutory providers failing to meet the growing need of children and families. Such equipment can: relieve pain, aid mobility, assist communication, give independence, keep a child safe or enable them to excel or learn. Yet families tell of the ‘battles’ they have to get the equipment they need, facing lengthy delays, for assessments, provision refusal and budget failings. That’s why Newlife equipment grants and loans are so important. They ‘enable’ children and families and make a major impact on their lives. Newlife also recognised the specific needs of terminally ill children, who Just Can't Wait for statutory services to respond to their needs. The 'Just Can't Wait' equipment loan service aims to deliver items from its suite of specialist equipment within 72 hours anywhere in the UK.

The very special and complex needs of disabled children and their families often mean that they are overlooked and so Newlife’s campaigning acts as their voice, creating awareness about the challenges they face and the need for a fair deal. Working with decision makers at local and ministerial levels, Newlife is campaigning to ensure a better deal for disabled children, today and tomorrow.

So that’s why we do what we do, because disabled children need Newlife and these children and their families remain at the heart of everything.

 

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