DEBRA

Enhanced EB healthcare for children at GOSH

DEBRA is raising money to fund an enhanced EB healthcare service at Great Ormond Street Hospital (GOSH). GOSH is an EB centre of excellence and treats up to 500 of the most seriously ill children from across the UK every year

Donations open 12:00 PM, 3 December 2019 to 12:00 PM, 10 December 2019

open_in_new http://www.debra.org.uk

Registered Charity in England and Wales (1084958)

Campaign target

£32,000

Amount raised

£33,417

Donations

48

Championed by Candis Club

  • A life without DEBRA would be a life filled with even more pain and we want to ensure that DEBRA is able to support other families affected by this debilitating disease, particularly the extra EB nursing support we received when Alisa was first born.

    — Joe whose daughter Alisa who has Non-Herlitz Junctional Epidermolysis Bullosa

  • Without (EB nurse) Katie’s knowledge, support, and an amazing level of patience, we wouldn’t have managed Dylan’s deteriorating condition as well as we did. To put it simply: Katie gave us the confidence to care for our son, something we will forever be grateful for.

    — Karen whose son Dylan passed away in September 2017, aged 3 months and 1 day old.

  • “It’s frightening having a child with EB. We will always worry but knowing he is getting the best possible care and support gives us peace of mind.”

    — Hayee whose son Rafay has Recessive Dystrophic EB

Situation

Epidermolysis Bullosa (EB) is a highly complex, painful and debilitating genetic skin condition which requires enhanced medical care and treatment if children are to be able to live with the minimum amount of pain and the maximum quality of life possible to them. Unfortunately, the NHS is unable to fund enhanced elements of the EB healthcare service at GOSH, leaving children vulnerable and families lacking the vital information, care and support that is essential to their child's well-being.

Solution

DEBRA has pledged to fund the outstanding cost of enhanced EB healthcare at GOSH so we can ensure children with this terrible genetic condition are given the specialist medical care and support they need. This includes enhanced nursing provision for children and access to a specialist dietician and podiatrist (walking is a huge challenge for most children with EB and the condition also makes food hard to swallow and digest). It also includes clinical supervision and training for EB nurses.