Christmas is a time for family, a time to be together and for some of our EB families a time to remember loved ones.
Christmas often means that life slows down and work comes to a halt, but one thing that never stops is the struggle for families living with EB. Your kind donation this festive season will ensure that all our families still get the important care that they require.
Christmas is such a special time of year when families come together to reflect on the year that was and celebrate being together. For many of our EB families it is also a time to remember loved ones they have sadly lost and remember the family times spent together.
While most of us look forward to an Aussie Christmas in the heat, for people living with EB multiple layers of dressings means keeping cool is critical. Hot nights covered in layers of bandages is miserable and painful, and can result in even more intense wounding.
By giving a gift of hope it means our Family Support team can ensure our EB Families get the best possible care which means less pain and less bandage changes.
Donate today and give the gift of hope.
Kylan has RDEB and will be 3 a week before Christmas. He is a typical little boy, who doesn’t let EB dictate him or his life. He is an emergency service vehicle loving, school bus obsessed, anything tractors, trucks, trains and car adoring boy – anything vehicle related is his favourite. He goes to preschool two days a week, and absolutely loves it, it has helped him so much this past year.
His feet have always been the most affected part of his body, as he his right foot was fully degloved and that’s how we originally learnt that he had EB. He has bleach baths and dressing changes every second day which can take anywhere up to 3 hours to do. When his feet are sore, he says his tyres are broken – I hate to see him in pain, but I love how he can relate his normal to something he adores.
Kylan’s favourite part about Christmas is like any other child, the presents, but he also loves to be with all his family. He especially loves to be around his cousins, playing and laughing. He also loves looking at all the Christmas lights.
What does Christmas mean to me? Christmas to me is a celebration which includes spending time with my family decorating the house, and giving to the people I love. Family is everything, so spending it with the people I love is what means the most to me. I’ve loved Christmas ever since I can remember, but even more so now that I get to watch my little boy love it too. I guess we don’t really know how long we have left with people, and I especially think about this with Kylan (though I know I shouldn’t) but making each holiday, birthday and each and every day count is beyond important to me.
Our family Christmas wish is and always will be a cure for EB. To see not only Kylan but all the other EB Warriors out there to live a pain free life would be the ultimate gift.
Emily – Kylan’s Mum
Donate today and give the gift of hope.