Kids reach for the sky at the Scenic Trail Race!
On June 24th our kids and their best friends did some fundraising of their own, and took part in a sponsored Scenic Trail race in Tesserete of Ticino, Switzerland (Pictured from left: Sébastien Lill, Sara Yo, Delphine Lill, Arienne Lill, and Mati Yo).
On June 24th, the Scenic Trail Race in Tesserete of Canton Ticino, Switzerland was a BIG event. Runners took part in everything from a 1km race all the way up to an epic 130km overnight race over our local mountaintops. We are an active family, and our kids like to run, however the complexities of heat intolerance and temperature dysregulation associated with EI are always something that we have to consider. With the kids race scheduled at 10am, we thought it should be cool enough, but it turned out to be quite the glorious day, and the temperature soared. By the time the warm-up for the race came around, it was already 25 degrees C (80 degrees farenheit), and we could see the heat was sapping everyone’s energy. We knew it was going to be a bit of a gamble for Arienne, but with all the kids geared up in their EI Cure Project T-shirts and ready to race, there was no way she was going to stand back and watch from the sidelines!
On our arrival at the race centre, people immediately started paying attention to our kids and their EI Cure Project shirts. We took a little time getting race numbers on, and had fun posing for pictures like the real trail athletes at the event. Then we walked the course, did a little bribery with jelly babies, talked about race tactics and enjoyed the cool of the shade, while the sun blazed overhead. The kids were quiet during the official warm-up, and definitely had their focus on the race whilst waiting for the start. In the 4-7 age group, Arienne, Delphine, Mati, and Sara had to complete 1 lap of the course (1km), and in the 8-10 age group, Séb had to complete 2 laps (2km). Once that start pistol went, all we could do as parents was wait nervously near the finish!
Well, I can tell you now, I think I had more adrenaline racing through my veins watching our kids race more than I’ve ever experienced with running my own race! My heart was in my mouth the whole time, and I could barely speak when I saw Arienne charging down the concrete hill to the finish line. I know every parent feels a little nervous about a child running down a concrete slope, but my goodness, that feeling is 10-fold when that little one has EI, and the risk of severe wounds is just so much higher. Phew! Thankfully anxiety gave way to joy, and I ran to meet her and help her navigate the finish line. Even as I write this, I have tears in my eyes at the memory of how I felt!
Putting my own anxieties about heat and injuries aside, I felt such enormous pride seeing our kids give this race their all.
All the kids did a super job! Mati took 1st place (Age 5-7), Séb took 3rd (Age 8-10), Delphine took a tumble and kept on going, Sara made her Papa get a work-out by insisting he carried her some of the way, and Arienne surprised us all by going ALL OUT!!!
Post-race Arienne was keen to show us her “Pocket-to-chin” arm technique, all the kids checked their medals for authenticity by biting them whilst posing for a ‘Team EI Cure Project’ photo, and then we all headed for gelato to cool down. At this point we were lucky enough to chat with the event organiser Aaron, and the kids all expressed their gratitude (mostly for the presence of the gelato van!) and told him all about their race victories and plans to return next year. The girls were grateful for the chance to have their faces painted, and our friend won a brand new pair of SCARPA trail-running shoes. As you can tell, we had a great day, and we’d highly recommend the experience to other families, including families affected with EI!
Despite sore skin, skin that blisters, and limited ability to sweat, Arienne absolutely LOVES to run! Once again, she showed us exactly how strong she is and that we can always find a way to help her do the things she loves. Of course I wish these adventures didn’t result in blisters and wound-care afterwards, but I refuse to let that stop her, provided it’s something she really wants to do. All we can do is try our very best to make the pain of EI a thing of the past, and this is exactly why we have founded the EI Cure Project. One day I want our daughter, and everyone else affected by EI, to have the choice of an effective treatment which means that they don’t have to deal with the pain that they experience everyday as a result of having skin that doesn’t work as it should.
I’m not sure how much we raised for this event exactly, because it happened in the midst of our launch campaign. What I can say however, is thank you to everyone who took the time to check out our story, and I hope that by doing so, you got to know our family a little better. We are just a typical family trying to make a difference for our daughter and for others just like us. Thank you to everyone who has donated so far, and thank you to everyone who will make a donation as a result of reading this update. We had a blast, and can’t wait to get started on our next event…