Myhre Syndrome parents regularly run circles around their kids, sometimes literally! Meet Alex and his mom, Lee, whose love for her son inspired her to lace up her running shoes in support of MSF.
“In 2007, I crossed the finish line of what was then called the ING Georgia Marathon (now the Publix Atlanta Marathon) and swore I’d never do it again. We’d had a week of unseasonably warm weather, the race ran out of Powerade/Water and, all in all, it was pretty terrible.
Fast forward almost 13 years - now married with a husband, son and dog - still running pretty regularly, but shorter distance races (if you want to call half-marathons “shorter”.) It wasn’t until some of the women from my running group, Decatur Moms Run This Town, ran the Chicago marathon this past fall that I thought, “Maybe I could do this again.” And then I thought instead of putting myself through 5+ hours of misery (I’m not what you’d call fast) for no reason, I could do it for a reason. And that’s how I came up with Marathoning for Myhre. I will be running the Myrtle Beach Marathon on March 7, 2020.
My son Alex was diagnosed with Myhre Syndrome this past July after five years of various testing to try to figure out what was “going on” with him. Myhre Syndrome is an extremely rare genetic disorder that’s only been documented in about 120 people worldwide. It’s a mutation of the SMAD4 gene that can cause a myriad of health problems.
People with Myhre can have issues with their heart and lungs, joint stiffness, constipation, hearing issues, mild to moderate intellectual disabilities, and autism-like behaviors in addition to a bunch of other things.
Fortunately, Alex doesn’t have many of the physical issues, and we’re hoping his case is mild, if there is such a thing, but it’s a progressive disease so we don’t know what the future will bring and this is why I’m raising money for the Myhre Syndrome Foundation. Because this disorder is so rare, there’s not a lot of information out there. The Foundation aims to raise funds for research, support the development of a patient registry, and to continue expanding education and awareness.”
-Lee Becknell (proud mother of Alex)
If you’d like to encourage Lee to keep running, please consider making a DONATION in Alex’s name!