My first child, Marc, was born in November 28th, 2008. Our lifes changed drastically that day when we discovered that our child had a cruel and horrible disease named Epidermolysis bullosa.
We’ve interviewed Lluís Fuster, Marc’s father, who was born with a genetic disease named Epidermolysis bullosa. This disease is better known as butterfly skin disease because of the similarities with butterfly’s wings, as they are really fragile. Lluís is a professor at a school of Pont d’Inca (Mallorca). Running lover since years ago, he will dedicate his first marathon to kids whom, as his child, suffers that minority disease.
- Is it your first marathon?
Yes, I’m one of those who used to say that never will run a marathon because of its distance and the effort that is needed. But as you can see, never say never. If I hadn’t done it for a reason like this, I will have never considered it.
- What was your sport motivation to help Debra-Piel de Mariposa, and, concretely, through Barcelona’s Zurich Marathon participation?
I unfortunately know what that disease is, as I have an affected child. Since he was born we are trying to organize and participate to all types of events with the objective of collecting funds for this association; this is one more. When we saw the possibility of participating in the marathon through migranodearena.org we haven’t had to think and we are really happy with the participation. We have a friend and acquaintance environment really solidary.
- At the migranodearena.org solidary challenge you refer at the epidermolysis bullosa as a “cruel and horrible disease”. Exactly, what is it the butterfly skin disease and what impact does it have at your child Marc life?
Butterfly skin disease is a genetic disease that basically affects at skin and mucosa. It is expressed with the appearance of blisters and internal and external wounds. As a result of this, people who suffer this disease must go bandaged. People affected of epidermolysis bullosa are characterized because of its fragile and sensitive skin, delicate as crystal, as with a small physic contact wounds and blisters are created; for this reason, this disease is also known as butterfly skin or crystal skin disease. There are three types of epidermolysis bullosa. Marc has the dystrophic recessive one, where blisters appear at the dermis. When wounds hear, shrinkage occurs complicating articulations mobility. Moreover, blisters can appear at mucosa membranes as: mouth, pharynx, stomach, intestines, respiratory and urinary tracts and at eyelids and cornea.
Marc is really affected, he can’t walk since more than two years, he has lots of difficulties for eating, complications for getting things… his life quality is low.
- How are you preparing this double challenge, sportive and solidary?
I always go running three or four days per week, but now I have had to intensify trainings. An old friend (Pere Lladó) that runs triathlons has helped me with the training schedule. I also have a group of friends with whom I go running all weekends and they have adapted to my necessities. Even one of them, Kico López, is running the marathon next to me.
- You have surpassed the 90% of your economic objective at migranodearena.org. Why do you think this campaign has had so much success?
We have talked with lots of familiars and friends, people from our environment has been solidary and we are gratefull.
- What do you think about being at the Barcelona’s Zurich Marathon podium?
Those things doesn’t have much importance for me, I don’t like standin out, but if I have to do it, I will.
- Which are the benefits in running for a solidary cause in reference to motivation and satisfaction?
In my case is all, if it wasn’t for a solidary cause, I wouldn’t have done it.