Alejandro’s EB story
Our experience of EB
My name is Alejandro Garcia Igazra, and with my partner Ana Caurin Blat, we have a two-year old son, Marc, who lives with recessive dystrophic epidermolysis bullosa, or RDEB. Our journey as parents has been shaped by this rare and painful condition. While there are lots of challenges, we remain hopeful for a better future for Marc and everyone living with EB. This is our EB story.
Marc’s diagnosis
When Marc was born, we were in total shock when doctors told us he had EB. We had never heard of the condition before. We felt an overwhelming mix of emotions. When the hospital staff explained the implications of having EB, it was hard to hear. From the daily pain Marc would endure, to the need for lifelong specialised care. We felt completely unprepared.
Life with EB
As time has passed, we’ve learned how to care for Marc and help him live as comfortably as possible, but it is still incredibly difficult. Ana and I are on our own in the UK – our families live in Spain, so we don’t have the same support network that other EB families might. That makes the everyday struggles even harder.
Marc’s EB also means it’s difficult for us to go back to Spain in the summer as the weather is so hot. He struggles more in the heat, as it makes his blisters even worse, and he ends up in even more pain.
Marc’s EB affects us every single day. We spend our days worrying about him (especially now he is at nursery) and change his bandages and dressings daily. Some days his blisters are worse than others, so we have to be incredibly careful with his skin.
Mealtimes are also a challenge because Marc’s EB doesn’t just affect his skin – it affects him internally as well. Feeding him takes patience and time.
Beyond the physical challenges, EB takes a huge emotional toll on us as parents. We have good days, and some bad days. It is hard to be strong all the time. Seeing your little boy suffering breaks your heart and knowing there is no cure in the short-term is even harder.
Support from DEBRA
One of the few things that has given us hope and strength is the support from DEBRA. We first found out about DEBRA when Marc was just a day old, still in the hospital. From that day, they have been there for us in so many ways.
They have been so helpful and proactive and support us in any way we need. Through DEBRA’s support grants, we have received seamless clothing to make dressing Marc easier and more comfortable. They even provided us with a cooling fan, which has been a huge help for us on warm days. The support from the specialist EB healthcare team and DEBRA has been invaluable, ensuring that we always have someone to turn to for advice and reassurance.
We have also attended several member events, especially Members’ Weekend, which has been a highlight for us. It’s a rare opportunity to meet other families and parents who truly understand what we’re going through, to share tips and experiences, and to feel less alone. It is probably one of the best weekends of the year as we are surrounded by people who just get it.
The EB Community Support Team has been incredible, and I know they are only a call away if we ever need anything.
Looking ahead
Without DEBRA, I can’t image what life would be like. They have been a constant source of support, from the very beginning of our journey, and we are incredibly grateful for everything they do.
If you are living with EB, or supporting a loved one with the condition, I want you to know that you are not alone; please stay strong. I encourage you to reach out to organisations like DEBRA, connect with others who understand and hold onto hope.
I pray that one day there will be a cure for this terrible condition. I hope for a future where no child has to suffer like Marc and EB is a thing of the past. I wish to see all those affected by EB, happy and smiling, and without any worries.