Member with self-proclaimed “long legs not meant for running”, will run Aramco Houston Half Marathon for FIRST
It is always exciting at FIRST when new members are inspired in such a way that they immediately embrace our community, making the most of our services, resources, and opportunities to connect. In June of 2013, we met Andrew and Heather Sanders for the first time, along with their son Ruairi, who is affected with epidermolytic ichthyosis (EI), at a regional support meeting in Dallas, Texas. Ruari was just six months old. In a little over one year’s time, they have made numerous connections within the FIRST community, providing support for others and enthusiasm for our advocacy efforts, in every possible way. Today we are sharing the story of why Andrew, a man who self-reportedly does “not have legs for running,” will run 13.1 miles, to say thank you…
Heather and I had decided we would try to run a marathon when we moved over to the United States. We had originally applied to do a full marathon in 2012, but our arrival to the states was delayed by a few months, so we decided to defer. I ran the Houston half marathon in 2013, not long after Ruairi was born. It was particularly hard to keep my training going on with little to no sleep in the early months! Obviously, Heather couldn’t run in 2013, because it was only a couple of months after Ruairi was born. She did run her first marathon in 2014 and managed to beat my time! So, needless to say, I have extra motivation for 2015!
But our story with FIRST began after Ruairi was born in 2012. We were obviously aware of the fact that his skin wasn’t as we’d expected. It was very red in places, and sort of paper-like in others. The doctors ran over a number of possible explanations, many of which were deeply concerning, and told us that he would be taken to Texas Children’s Hospital in downtown Houston. Before he was taken by ambulance, one of the neonatologists mentioned the possibility of ichthyosis to us.
I was aware of ichthyosis, having seen a documentary back home in the UK about a family in England who had two daughters with harlequin ichthyosis. When we googled the term ichthyosis, the image results primarily showed babies with harlequin, so we knew that Ruairi didn’t have that particular form of ichthyosis. But we were obviously still very worried about him. Heather quite quickly found her way to both FIRST and the UK ichthyosis support networks and we have found them to be an amazing resource. Indeed Heather is very active in the Facebook community, both with friends whom we’ve met at FIRST conferences and with new members. We had a great time at the FIRST Family Conference in Indianapolis this past summer. We met some amazing people and learned a great deal.
We were even motivated to organize a fundraiser day at the Houston Astros a few months ago, which we were more than pleased to do. It’s really great that MLB teams do this for charities. It brought some of the local families who are affected by ichthyosis together, while raising some awareness among those who came to the table and picked up a wristband or some literature. Obviously, there is still a long way to go. It was just only this weekend that I had some harmless but frustrating comments from strangers that Ruairi looked like he’d gotten too much sun. My stock response is to tell them that he has a skin condition and, and no, I haven’t let my two year old get a second degree burn, although I tend to only think the latter part of that line!
In all honesty, I’m running the 2015 Houston Marathon, January 18, 2015, in hopes that I can raise some money to help support FIRST by way of thanks for the support they have given us. I’m sure I can get some of my friends to sponsor me on the basis that a half marathon is a challenge for anybody, but particularly a former basketball player of 6’8″! My long legs are not really made for running.
In the longer term, I’m sure like most people reading this, I really hope for a cure. I’m confident that a good amount of research into genetic conditions is already happening and that people who deal with ichthyosis can benefit from scientific discoveries elsewhere. Obviously this all comes down to money. Perhaps the money I raise can also be put towards research. But perhaps just raising a little awareness will also do some good! A donation link has been set up so you can join us in supporting FIRST, and making a difference.