September 2022 Shea was playing rec soccer and kept coming off the field complaining he was tired. He started complaining he was tired while playing with friends. Eventually this happened enough my Mama instinct went into overdrive and I brought him to his pediatrician. Now hindsight is 20/20 and turns out we have one of the best pediatricians around. They drew a ton of blood and said well get back to you. You know the best and worst thing about modern medicine is the ability to view your results before your doctor. Well Shea had a high CK. I dare you to google that. Then I dare you to google that about your son and be 6 months pregnant. Immediately muscular dystrophy came up. More googling (don't ever do this) led me to believe he might have Becker muscular dystrophy.

Lots of bloodwork and doctors appointments and months later we sat on a video conference with his doctors at Boston Children's Hospital on St. Patrick's day and learned that Shea did in fact have Becker muscular dystrophy.

We learned as much as we could. It turns out we had learned about Shea's condition about 10 years before most do. Most with Becker's don't find out until at least their teenage years. We had follow up appointments at Children's in which we were told "go home and forget about this".

Do you know how hard it is to go home and forget that your son has a genetic progressive degenerative disease!?! One that the researchers and doctors literally have zero treatment or cure for?! One that they also have no idea what the prognosis and progression will look like?

Well fast forward and here we are just about 2 years later and as I sit here crying typing this I can tell you that most days we are so FUCKING fortunate to be in a place where we do in fact forget about this most days. Shea has not been symptomatic much at all since diagnosis. He plays flag football and runs around with his friends. He is a great swimmer. He can give such a good hug that you literally cannot escape.

However every so often my mind wanders and it remembers that most with Shea's condition lose their ability to walk in early adulthood. Sometimes Becker's can cause cardiomyopathy so Shea is already being followed by a cardiologist. He will have yearly checkups at Children's from now until eventually he needs to find someone for adults.

There is no cure. There is no treatment. MDUK is funding and advocating and monitoring and trying their best to help find a cure and/or a treatment and at the very least support families like us (and quite frankly those who have it much harder than us).

So for these reasons I am running for Shea and for MDUK and for everyone out there with Becker Muscular dystrophy so one day when a mom hears the same words I did she will know there are options out there.

I thank you from the bottom of my heart.