With her wide smile and her happy nature, you might not even realise that Maisy lives with EB.
Maisy was born with Recessive Dystrophic EB, which leaves the entire body vulnerable to severe agonising blisters from something as insignificant as clothing seams, or turning your head on a pillow.
Like any other 11-month-old little girl Maisy loves to play, she loves to laugh with her older brother Harry and she loves to call out to her mum, Amy, and dad Lee.
But when she plays, Maisy is likely to inadvertently damage her skin. When she waves to her parents, she occasionally knocks her hands together, causing the skin to break or blister.
Her body is bandaged, but even that cannot protect Maisy’s skin from the everyday bumps and rubs that a happy and inquisitive baby attracts – her skin is simply too fragile.
This tiny little girl is given pain relief medication every six to eight hours simply to make her comfortable. When her nappy is changed and her blisters are lanced and dressed she requires a dose of morphine.
The sores are particularly bad on Maisy’s hands and the back of her head, although no part of her tiny body is immune to the blisters.
Amy admits that looking after Maisy can be tough, especially when her daughter’s skin is particularly bad, as it was this summer in the stifling heat.
But this determined young mum said she will not let Maisy’s condition get her down. In fact she, and the entire family, is driven to do as much for DebRA as possible, raising funds for and awareness of EB.
Amy said: “I do have my down moments. Sometimes, when I have had a bad night and not much sleep, or Maisy’s skin is really bad, I do feel low.
“But I know that if I stay down I might not get up again, so I try not to let the feelings take over. I just need to get on with it. That’s why I am so happy to do anything for DebRA. We need to raise money and we need to let people know about EB because that’s the only way we are going to find a treatment for Maisy.”
In their determination to support DebRA and raise awareness of EB, Maisy’s entire family posed for press photographs with model and DebRA vice president Nell McAndrew to help launch DebRA’s Mad Hatter Day in May this year.
Maisy and Amy have also featured in a special DVD, which highlights the inspirational nature of those who live with EB, and calls for more support from the public.
Amy said: “Maisy is talking now, calling out “momma”, and she laughs a lot. We cope well and I manage without calling on the DebRA nurses that often. When I do need them though, they are there straight away to help me. Jackie (Jackie Denyer, EB Nurse Consultant) usually calls to see me on her way to work at Great Ormond Street Hospital, which is not too far away.“I get a call every month from Lesley Haynes, the DebRA dietician, and I get support whenever I need it over the phone from the whole team.“Although everything is fine now, it might be more difficult in the future, who knows? It helps that the nurses are always there for me.”
What does the future hold for the family?
“We are busy arranging our own fundraising events.” Amy said. "My dad is holding a golf day and we have lots of collection boxes on the go and of course we support DebRA whenever we can, after all they have supported us.”
