ISSUE 55 — DEC 2020
Hayden’s EB Story, as told by Mum Kimberley
“My name is Kimberley and my 5 year old son Hayden has Epidermolysis Bullosa (EB) Symplex. I had never heard of EB before my son was diagnosed just before his first birthday. He was showing signs of his skin peeling on his hands, feet and knee just after he started to crawl. During an appointment with Sam, our EB nurse, and Simone from DEBRA, we learnt what EB was and how we can assist Hayden with his everyday life. We didn’t realise how many small everyday simple things needed to change — soaps (no harsh ingredients or strong smells), clothing (can rub & cause blisters), temperature (too hot and he blisters instantly), tooth brushes (extra extra soft brush due to sensitive gums), and the healing time for any bruises or cuts/sores. There are definitely tough days where Hayden is upset due to the pain. It is truly heartbreaking when your child asks you if his skin will get better. The support that DEBRA and their amazing staff gives us is amazing. I’m not sure I would be able to get through all of this without them. They provide financial and emotional support for the families which we are forever grateful for!
There are definitely tough days where Hayden is upset due to the pain. It is truly heartbreaking when you child asks you if his skin will get better.
EB is the worse disease you have never heard of — nothing is truer than this, but we can get through it with support, love and understanding of this incurable condition.” Though the Melbourne Market isn’t holding a Golf Day event next year, raising donations for DEBRA Australia is still a major priority. The Melbourne Market Golf Day Committee would still like to spread the word about DEBRA and how we can support them. Please go to the DEBRA Australia website to donate and show your support: donate. everydayhero.com/d/7rIBbKhPUsivECMHAqRDBQ/ amount/8ef1186b-f8c4-4c9f-8463-ab13ae29dc83 All proceeds raised will go straight to DEBRA Australia. By donating you are directly impacting the lives of sick children, and together we are turning ideas into life-changing programs. Your consistent support will ensure that DEBRA can continue to make this impact on EB families across Australia ensuring that they are receiving the best possible care.
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