EI Cure Project kids BRING IT on Race Day!
On June 8th, we returned for our little ones to take on the Scenic Trail Race in the beautiful scenic town of Tesserete in Canton Ticino, Switzerland. Runners, young and old and everything in-between, were taking part in multiple organised events ranging from a 600m race all the way up to an epic 130km overnight race over our local mountaintops.
Our kids, Sébastien, Delphine, and Arienne, along with their best buddies, Mati and Sara, had taken on the challenge with gusto last year, and so they were all eager to see what they could do this time around, in more familiar surroundings.
The rules had changed since last year, meaning that Séb, Mati, and Delphine were all in the same age category (Under 10’s), and Arienne and Sara had a shorter distance to run, but would be competing with a broader age group (Under 7’s). The boys started to get competitive, whilst Delphine felt a little sad at being separated from her Sister and best buddy Sara.
In addition, the course had changed, so after arriving and picking up their race packs, we took a walk to try and find the new route. This proved a little challenging, and as parents we started to worry about our kids getting lost. We eventually found out that we didn’t need to worry, because the kids race would be led by easy-to-spot officials on mountain bikes!
So after a bit of a pep-talk about the ability to cope with change being an important life-skill, and with a bit of help from an emergency bag of jelly babies, the kids put their race-faces on, and gave it their BEST!
Now Arienne is a kid who has Epidermolytic Ichthyosis, but she is also a kid who happens to love to run…
EI comes with a lot of red-flags when it comes to running, such as increased blistering and skin infections, along with the ever ominous risk of sudden heat stroke, and this means that many kids with EI don’t do a lot of sports. However, Arienne truly LOVES to run, and as an active family, we decided to prioritise mobility and saying “Yes” to activities, in addition to finding the all-important adaptations to facilitate being active in spite of blistering skin.
Arienne loves to run, but as you will see in this short video, she is also very fast! Just keep an eye out for our logo, and the blazing red hair, and you’ll spot her no problems. She is quite the “Pocket-Rocket”!
After our little ones Arienne and Sara finished their race, our older kids got ready for their turn. The Under-10 category had to complete a longer course, with lots of different terrain, and a rather steep hill covering the last 300 metres. Thankfully, Arienne’s big brother Séb also loves to run, and he loves to run UP hills even more. He did a super job during his race, and despite a fall resulting in a bloody knee early on, he seemed able to take 1st place with relative ease.
All the kids completed their race without major upset, and despite each child facing their own unique set of challenges during their race, the elation they felt when in possession of a shiny new medal seemed to make it all very worthwhile!
As parents, Tom and I were really proud of our kids and their friends for doing their races and overcoming whatever challenges they felt they faced in order to get to the finish line. However, one of the things we most enjoyed was seeing how they all encouraged each other, cheered each other on, and helped to pick each other up when they were feeling overwhelmed or anxious.
It was also such a joy to stand back and look at them all in their EI Cure Project T-shirts, let’s hope we inspired a few people to take a moment and look up our cause!
Tom and I have always prioritised our daughter’s mobility, comfort, and flexibility in her care journey with Epidermolytic Ichthyosis, and this might mean that we may have a greater tolerance for an intensive skincare routine in comparison to others. There have been times when we have questioned it, and wondered whether we are doing the right thing. Many children and adults with EI cannot manage such a care routine, and others are so severe that no matter what they do, they are severely disabled by their skin. For our family however, you only have to look at Arienne after sports events like this to know that we are doing the best that we can to support her love of being active.
When Arienne was a baby we were told that she would never be able to go to a normal school and do normal activities. It was such a blow at the time, but in reality we refused to accept this, and it motivated us to find a better way for our daughter. Whilst we are still working on finding better treatments for everyone with EI, I think it’s important to show new families affected by a new EI diagnosis that life as you know it is not over, it just takes a bit of time to find a new normal, and that the EI Cure Project is here to help along every step of the way.
While you are here, please consider making a donation to the EI Cure Project to help fund research.
Thank you