Ever since we can remember, our mom has told us that she has "special muscles". When we were younger, we thought this meant that she was a superhero and her special muscles were her superpower.
As we've gotten older, we now know that her special muscles are actually called FSH muscular dystrophy (FSHD). We can see every day how FSHD makes things hard for her, like when she tries to comb her hair.
When we first noticed our mom needing to slide her right arm up the side of the bathroom wall so that she could reach her head to comb her hair, we asked her about it because we noticed it was different. Now, seeing the special way our mom combs her hair or seeing something else that is "different" is normal in our home.
We still choose to call our Mom's muscles special and even though she would disagree, our mom will always be a superhero in our eyes because she created our super cool Colorado Walk & Roll to Cure FSHD fundraiser.
We are really proud of our Mom for organizing our Colorado fundraiser for the past 4 years to raise awareness and money to help pay for research that will make a difference in our lives. We learned that there are nearly a million people around the world who have FSHD. We are so excited that we get to help them too.
There is no treatment or cure yet—but there is hope.
The FSH Society has given our family hope. Our Mom has met other people with FSHD so she has friends who understand what it’s like and as we raise money for research, we can see each year how scientists are getting closer to finding a treatment.
Last year, along with the help of our best doggie angel, Bailey, we passed our goal to raise $2,500 and instead raised $5,600 with the help of our family, friends and our school.
This year we hope to beat the amount we raised last year! It's not easy asking people for money but it's even harder to watch our mom and her friends struggle because of their special muscles.
We hope you like our story and will want to help too.
Thank you for your support! - Ayden, Nolan & Bailey