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The sight of Alisa playing wouldn’t immediately alert you, but she runs on balled feet as her toes have started to fuse together where the skin has shed and healed so many times.

Alisa is seven years old and has Non-Herlitz Junctional Epidermolysis Bullosa. When she was born her parents - Joe and Lee - knew immediately there was something wrong with her angry, pink skin. The initial days and weeks after Alisa’s birth were tense while they awaited a diagnosis. 

Specialist EB nurses part-funded by DEBRA provided a lifeline to Alisa’s parents in the early days, showing them how to change her dressings, lance the blisters that developed all over their daughter’s body and clean her open wounds; a harrowing daily experience dreaded by both Alisa and Lee.

Blisters also form easily inside Alisa's mouth, so she consumes only a soft food diet. Alisa can't physically eat enough calories each day to aid her constantly healing body, so she is fed via a gastrostomy button, in her tummy, during the night.

DEBRA’s Community Support team has advised on mobility aids for Alisa, particularly at school, where she uses a wheelchair to give her independence and a special low level padded chair – this enables her to get up and down un-aided and prevents her legs rubbing together which causes additional friction and damage. These adaptations make life easier and less painful for Alisa. 

Alisa loves reading; her favourite place is her local library, where she can lose herself in tales of far-away lands and beautiful princesses. She enjoys riding her bike and the promise of a ride out for her favourite ice-cream is, sometimes, all that gets her through the painful, daily changing of her dressings.

Joe and Lee are great supporters of DEBRA, fundraising with collection canisters at their family restaurant as well as organising regular fundraising events.  Joe says, “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.”

Pictures of Alisa courtesy of Leo Wilkinson Photography

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