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Maisy

Maisy

With her shy smile and cheeky nature, you might not realise that Maisy lives with Epidermolysis Bullosa (EB).

Maisy was born with Recessive Dystrophic EB, which affects her entire body, including oesophagus, tongue and mouth, making her vulnerable to agonising blisters from contact as minor as the seams of her clothing, or turning her head on a pillow.

Her body is bandaged, but even that cannot protect Maisy's skin from everyday bumps and rubs as it’s simply too fragile. Her mum Amy constantly lances the blisters and treats the open wounds, to prevent infection, that form as a result of normal life, administering strong pain relief every six hours to enable her to cope with the pain. A daily routine which can take hours.

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Maisy attends a mainstream school, using an electric wheelchair as her mobility is limited - but she needs to have someone with her all the time. Her dedicated carer keeps her safe as a knock from a class mate could have disastrous consequences.

Like any eight-year-old girl Maisy loves playing with friends, dressing up and wearing make-up - but all of this 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.

EB also affects her internal organs and Maisy has regular scans to monitor her heart and other organs. Maisy's hands are particularly affected causing restricted movement and her toes have completely fused together, although toe surgery means she can walk but not very far.

Amy admits that looking after Maisy can be tough, especially when Maisy is in pain. ‘It’s been a nightmare at times. It’s so heartbreaking to see Maisy suffering. I wish I could take it away from her but all I can do is look after her the best I can. I just want to give Maisy the best life I can.’

Amy says that she does have down moments. ‘Sometimes, when I’ve 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 have to get on with it.’

‘That's why I am so happy to do anything I can for DEBRA. They have been a huge support emotionally and practically, offering holidays and helping negotiate housing and mobility issues.’ The entire family is also driven to raise funds for and awareness of EB. ‘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.’

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Could buy a special needs feeder system for babies who have blistered mouths and are unable to feed using a regular teat.

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