cure-eb.org

Our morning routine with Poppy:

Up at 5:45 and get myself ready. Wake Poppy at 6:15.

Full dressings refresh and body check. We change feet and hand dressings completely. Any open wounds are changed and clean tubi-bandages applied all over. This takes roughly 60-90 minutes

Get dressed.

Breakfast (can take 60 min depending on how her throat is) & medication

Clean teeth

Struggle with which footwear can be worn

Leave for school at 8:30am

We do the same routine every day without exception

A typical month would include 1 hospital visit, but the last month has had more visits than usual. We’ve had a full review day at GOSH, 3 appointments with GOSH following difficulties with her throat resulting in an oesophageal dilatation, and one home visit.

The big areas of concern are Poppy’s hands and feet and her oesophagus. Her hand dexterity is worsening as she uses them more at school. The skin becomes damaged and blistered, and on repair the skin is definitely tighter causing contortion, and her grip is considerably weakened.

Her feet have been the most vulnerable area since birth. The skin on the left foot is so fragile it breaks down regularly, which results in difficulty walking. We are keen to keep her as mobile as possible for as long as possible.

Her throat has been a real struggle of late. We have kept a dilatation at bay until now. This has been so hard to see as she loves food so much and it definitely brings comfort when she’s having a hard time.

Eyes are an ongoing problem too. Abrasions have been less frequent but are just awful for her when they do happen. 4-5 days without sight spent in the dark.

Daily life is consumed with dressing changes, preparation for dressing changes, preparation for meal times. There is little time outside school for play during the week. Every hour has to be factored in around dressings. Play dates have to be structured and the routine scheduled around them. There is a huge impact on family life especially for siblings who very quickly have to learn patience and understand that a lot of mummy/daddy time has to be given to the child with EB.

People still don’t know EB by its name. If we ask if they’ve heard of butterfly skin they have an idea, but no one really knows unless they have someone close with it.

 

Poppy says ‘I have very delicate skin so you have to be careful with me’

The everyday things that her brother and friends do are not possible I.e. Scoot to school, run around the playground, have hot dinners, play dates after school, swimming, ballet. It’s heart breaking to see and you always feel terrible for being the one that says no. Having said that where there’s a will there’s a way. Poppy will try in whatever way possible to do what she can: she loves gymnastics at school, she’s taken Teddy Tennis lessons, and she’s done yoga. She may not be able to do these things exactly right, but she will find her own unique way of getting involved!