Good Cause of The Month: Help this Mum to Fight Epidermolysis Bullosa
I met Kate for the first time last September when our sons started pre-school. They are in the same class and with some other mums we decided to spend a morning in a local cafe to get to know each other better. Some of us were accompanied by our other children: I took my Lau and Kate brought Poppy along.
What is Epidermolysis Bullosa?
Before meeting Poppy I wasn’t aware of her condition of Epidermolysis Bullosa (EB) also known as butterfly syndrome. The skin of the “butterfly children” is as delicate and fragile as a butterfly’s wings, the slightest knock or bump can result in the skin either blistering or tearing away. Poppy, in spite of her condition struck me as a lovely, very friendly, happy and incredibly calm little girl, who just wants to do the same things as her peers. And Kate is a mum with so much positive energy and the type of person you’d call grounded, she seems both mentally and emotionally so strong and stable.
Caring for a child with this dreadful condition is incredibly challenging. It is really hard to describe how moved I was learning about their everyday struggle and living with EB. Poppy needs assistance with lot of things like dressing, going to the bathroom and even to remove the lid from a pen. Her condition means a lots of pain, everyday.
As Kate says: there’s no break and you can’t take a holiday away from it. We desperately want to be able to change it, not just for Poppy but for the 5000 people living with EB.
The everydays of EB
How do they fight their way through every single day? Since EB affects the entire body, including the internal linings of the skin, Poppy’s whole body is being checked for blisters and bandaged from neck down every morning. Her eyes are often unable to tolerate light. Eating is very challenging as she can only eat puréed and very soft food. But at the same time her diet plays a very important role in helping to heal her damaged skin. Her bath time routine starts right after getting home from school as it’s a very lengthy, 2 hours long process which ensures she avoids infections. Poppy has a full time carer at school as even the simplest of tasks can be a struggle. Due to repeated blistering the skin on Poppy’s hands have become so damaged she no longer has full use of her fingers. EB leaves little time for play. Poppy misses out on so much of the childhood experiences that most of us take for granted. She just about has time to squeeze in her reading book from school before it’s bedtime.
So, Kate decided to raise money and run the London Marathon this year. I really find her will power absolutely amazing and I want to help her to reach her target.
The Sohana Research Fund is a charity dedicated to finding a cure for this dreadful condition. They are an amazing charity, run by the parents of a little girl with EB. Every penny that is donated goes directly in to research. With all the recent publicity we are now much more hopeful than ever that a cure can be found but it needs the funding.
This is her donation page set up on Virgin Money Giving
Please, do give, if you can and help to find cure for Epidermolysis Bullosa.
Want to read another article from my Good Cause Of The Month Series? Try this: Good Cause Of The Month: The Happy Healthy Cook Book By Heart Research UK