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Ayaan’s story

by Ayaan Syed, 21st October 2024 (Last updated 19th December 2024)

Every week thousands of kids walk to school; for Ayaan, this short journey is impossible.

A smiling boy in a burgundy shirt holds a chalkboard sign with "#FightEB" written on it, standing against a light-colored wall.

Ayaan loves meeting up with his friends, travelling to new places and trying new things. However, even walking short distances causes terrible damage to his skin, so staying active with his friends is a real challenge.

Ayaan suffers from epidermolysis bullosa (EB) – a genetic condition which causes the skin to blister and tear at the slightest touch, leaving behind open wounds.

Sometimes, EB causes so much pain that he is unable to walk.

 

“It breaks my heart that Ayaan can’t take part in activities that other children take for granted, like playing football and walking to school. He gets so frustrated, he’ll say ‘I hate myself, I don’t like my skin’. I feel so guilty.” – Ayaan’s mum, Tayiba

Care and support from DEBRA help Ayaan look after his skin, so he can spend more time with his friends.

Specialist EB nurses, part-funded by DEBRA, showed Ayaan how to dress his blisters and what creams to apply to encourage healing. And through DEBRA’s Members’ Weekend and other events, Ayaan and his family have been able to meet others suffering from the condition.

“I never imagined I’d meet so many other people suffering from EB. The support from DEBRA has been amazing – knowing they are able to help whenever we need it has made such a huge difference to our lives.” – Ayaan’s mum, Tayiba

EB is always there – there is currently no cure.

On-going research provides real hope for effective treatments and a cure for EB. Until then, Ayaan has no other option but to learn how to cope with the debilitating pain. ‘I’d love to make EB disappear,’ says Tayiba, ‘That’s why it’s important to keep funding research into this condition.’

Tayiba and Ayaan are raising money which could help more people suffering from EB get the help they need, and ultimately find a cure for EB.

A woman and three children sit and pose together on a sofa, smiling at the camera.