Thanks to all who supported us during our struggle with EB and the Time to Fly 2013 5k fundraiser at Harriet Island Regional Park in St. Paul, Minnesota, which benefited Pioneering Unique Cures for Kids (PUCK). Our team (Team Puck) had the most members of any team at the event (113) out of 2,200 total participants. Team PUCK also raised the most money of any team (over $34k) thanks to our team captain’s hard work and dedication, Christie Zink. We hope to top that amount next year and participate for years to come in this and other EB events.
This will likely be our last post to this site. Our lives have mostly returned to "normal" and we spend most of our time enjoying every second we get to spend with our only surviving son Sean. Evan and Katelyn are always in our thoughts and our hearts will never be full until we are in their company. Many people cannot comprehend how others can cope with such grief. My answer is "what else can you do?" Our greatest comfort is that we were able to spend time with each of our kids, even if it was brief, and that they are no longer suffering. It has also given us the opportunity to meet so many other amazing people out there who have been affected by EB. Our mission in life now is to help those who are still battling in whatever way we can. Our lives are forever changed, but I can honestly say they have changed for the better. I’m not saying times aren’t tough, especially when a wave of emotion hits, but there are many more good times than bad.
We have yet to find out if our son is a recessive carrier of JEB-PA or not. We go down in October to see about that and what it will mean for his future. I cannot imagine our luck can all be bad.
My wife and I will be celebrating our tenth anniversary on the 26th. It is hard to believe it has been so long. We could never have imagined how these last 10 years have played out. Our marriage and faith has been tested numerous times and we are still here together. I just hope the next 10 years will bring a cure for EB. If not we hope to still be battling alongside the survivors searching for a cure!
We still have a personal donation page on DebRA hoping to raise $10,000 to benefit DebRA and the great work they do. So far we have raised $2,680. Please consider donating to this or any other cause related to EB. Even a few dollars goes a long way and if hundred people give it adds up quick. Give a little and get so much more in return!!!
I would like to end by thanking Paul from www.PostHope.org . If not for PostHope our story would not have reached so many and we would not have had an outlet for all of our emotions. It truly was a great way to deal with the day to day struggle alongside our beautiful daughter while preserving some of our sanity and informing our friends and family of her progress. Please consider donating to PostHope as well so they can continue to help others grow, heal, and share.
Brandon Lehigh (Katy, Sean, Evan, and Katelyn Too!)