Unlike other families, when we found out we were expecting our first baby, we knew that our baby would have a 50 per cent chance of being born with ‘the worst disease you’ve ever heard of’.
When Lylah was born, our worst fear was confirmed as soon as we laid eyes on our little girl – Lylah had Epidermolysis Bullosa (EB). The tops of both her feet were completely raw, her fingers were encased in large blisters and deep wounds extended up onto her wrists. In the first 36 hours after Lylah was born, we were transferred around to three different hospitals in order to find a team that could provide the specialised care she needed.
The next few months were the hardest. Even though I knew our baby would have a 50 per cent chance of being born with EB, I wasn’t prepared for the life that lay ahead, and I struggled to come to terms with my little girl having ‘the worst disease you’ve never heard of’, which is likened to living with third degree burns. Each day was filled with pain and a lot of tears as we were faced with new challenges.
Our little girl underwent hours of wound care each day, her feet were bandaged, her fingers were individually dressed, and then her hands were bandaged. She was unable to breastfeed as blisters had formed on her tongue, we had to modify everyday baby items to protect her skin and minimise further wounds. Her nappies were lined with a soft material, her car seat, pram and bassinet were all lined with lambswool and/or minky and some of her clothes had to be turned inside out as the seams caused blistering.
Fortunately, the subtype of EB that Lylah has slowly improves with age, which is unfortunately not the case with the majority of EB sufferers. Although Lylah’s EB isn’t as severe as it was when she was born, it still heavily impacts most things in our everyday life – from what clothes we’re all able to wear (our clothes can damage her skin too) to what she eats and what she plays with. Everything has to be considered.
The DEBRA community and RVA Partner, DEBRA Australia, has unconditionally supported our family over the last 16 months, helping us through the hard days, and creating a brighter future for Lylah. We don’t know how we would have coped without DEBRA Australia’s support and the programs they run. Unfortunately, we know that Lylah will face many more challenges because of EB, but we know with her strong determination and the support and help from DEBRA Australia, Lylah will be able to overcome these challenges. Thank you DEBRA Australia!
Please check the Rare Disease page(s) for related Support Organisation(s)