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Right now, our families with EB are trying to imagine their Christmas celebrations. When all your child wants for Christmas is the pain to go away, or to be able to play with other children, what can you say?
My name is Deirdre and I’m part of the family support team at DEBRA. Let me tell you about one little boy I came to love. For a little boy, Liam had such a big personality! And since he passed four years ago, we have all missed him terribly.
You would have loved Liam. He was such a character! Despite the pain he dealt with daily, he had a wicked sense of humour and a smile that would light up the room. And like many children who live with constant pain, he seemed to have a wisdom well beyond his years..
But because he couldn’t run and play with the other children, he often felt isolated. Even a shopping trip was a great treat.
As Liam got older, the biggest problem was keeping him fed. EB impacts not only the skin, but every function internally. Eating even the softest of food hurt and would result in damage.
Sadly we lost Liam in 2016. He couldn’t fight EB any longer. We miss him every day.
When you give, you help advocate for families like Liam’s.
Many people with EB have a time of year when they tend to feel more poorly. For Liam, it was always in the winter. A small cold would trigger a tremendous setback. So for his family, Christmas was never a joyful time. Liam never even looked forward to Santy. Can you imagine?
Because of you, we won’t let people living with EB or their families be forgotten. Your support means we can offer emotional and practical support for them. We can continue to urge our government to provide more to help these families. We can give them all the caring and support – and yes, love – we can.
How your donation will change lives
Your generous Christmas gift this year is so important to people living with EB and to the families that love them. Your gift will also help us advocate for more research to create treatments that help. EB is such a rare condition, so not enough research projects are undertaken.
“Please listen to the heartbreak of families like ours. These children and all
people with EB need your help.” – Kathleen, Liam’s granny.
Right now, while we’re all thinking of the warmth and joy of the season, I hope you will spend a moment thinking of our families and
consider making a gift to DEBRA. If you are able to, a monthly gift would help us to rebuild lost income and plan ahead as we continue to invest for a future free of EB.
Thank you for helping keep Liam’s memory alive. His legacy is the hope that no other child will have to suffer as he did.