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Hayee talks about the huge difference DEBRA’s Community Support team made to him and his wife Sidra when their son was diagnosed with EB.

“My wife and I had never heard of EB before our son Rafay was born. Now it’s at the centre of our lives.  Rafay was born at Manchester General Hospital and very quickly diagnosed with Recessive Dystrophic EB and transferred to the specialist EB healthcare team at Birmingham Children’s Hospital (BCH).  But understanding what EB would mean for us wasn’t easy. At the time, we’d only been living in the UK for about six months and English is not our first language – we come from Pakistan originally, where Urdu and Punjabi are spoken at home. It was completely overwhelming, trying to understand complex medical terms and learn how to look after Rafay, change his dressings and protect his delicate skin.

“Thankfully, Zainib Hussain, our DEBRA EB Community Support Manager and Victoria Warren, our Specialist EB Nurse (who DEBRA part-funds) at BCH were able to work very closely together and help us.  Zainib has attended hospital appointments and even home visits where she has been able to translate for us. We have faced many difficulties but Zainib has helped us cope with a big one – the language barrier has been lifted.

“Victoria has been wonderful too, going beyond the call of duty to make sure Rafay gets the care he needs. We had some difficultly obtaining the right dressings for Rafay on prescription and she spent a lot of time on the phone explaining EB to our GP and even visited the surgery in person* to make sure they really understood Rafay’s needs and could provide appropriate dressings and medications.  We’re glad to have her dedication.

“Rafay’s our beautiful baby, our first born son, but it’s frightening having a child with a very rare condition like EB. Since he was born, he has had to stay in hospital several times, has had infections all over his body, and at times had blisters in his mouth and been unable to feed. He’s my priority now and his needs come over mine. We will always worry, but knowing he is getting the best possible care and support gives us peace of mind.

“The DEBRA EB Community Support team has also enabled us to understand the complicated and often confusing health and social care systems. Zainib has helped us with our applications for Tax Credits and Disability Living Allowance for Rafay, as well as signposting us to other organisations for support with things, like immigration. We’ve also received a support grant from DEBRA to purchase essential items for Rafay.  Now, when we need support, we contact Zainib who is just a phone call away. We’ve received a lot of support from DEBRA in many ways – I honestly don’t know how we’d manage without them.”

* (DEBRA’s additional funding enables BCH to offer an enhanced healthcare service to people living with EB).


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