By: Ashley Burkman, Parent of Carter C.
Today, my husband Matt, our two sons, Carter and Calvin, and I had the opportunity to attend Family Advocacy Day with Connecticut Children's and the Children's Hospital Association in Washington, D.C. We were there to advocate for Medicaid, disability services, and the programs that help children like our son Carter live full and meaningful lives.
Carter is 7 years old and has a rare form of muscular dystrophy called LAMA2-CMD. He uses a power wheelchair and relies on many medical and adaptive supports to participate in school, community activities, and everyday life. Through Medicaid and the Katie Beckett waiver, our family has been able to access critical services that help make all of that possible.
Advocacy is personal for us.
When Carter and his twin brother Calvin were born, we thought our biggest challenge would be figuring out life with twins. Instead, we quickly learned Carter had low muscle tone and was admitted to Connecticut Children's for testing. An elevated CK level pointed to muscular dystrophy, and a few weeks later, genetic testing confirmed LAMA2-CMD.
During that first hospital stay, a nurse asked if she could place Carter on the Katie Beckett waiver waitlist. At the time, I had no idea how important that simple conversation would become.
The years that followed were hard. We paid thousands each month in insurance premiums while also covering deductibles, equipment, therapies, and expenses that insurance simply doesn't cover. During COVID, Matt left work to care for the boys, and for a time, we lived on one income. We even considered moving out of state because the wait for services felt endless.
Then, just before Carter's sixth birthday, we finally received the Katie Beckett waiver.
The impact has been life changing. The financial relief allowed Matt to pursue a lifelong dream and open his own chiropractic practice. We've gained caregiver support through Community First Choice and have been able to focus more on living and less on simply surviving.
That's why we showed up today.
We met with staff from the offices of Senators Blumenthal and Murphy and Representatives Himes, Hayes, Courtney, and DeLauro. We shared our family's story and explained why these programs matter. The highlight was meeting Rosa DeLauro herself, who immediately told us to call her Rosa and greeted us with hugs like we'd known her forever.
The boys had an incredible day, from riding in accessible taxis and being part of important conversations to ending the evening with face painting, dancing, ice cream, and lots of fun. They may not fully understand the impact of today yet, but they definitely know they were part of something special. Both are sleeping hard tonight after a long and memorable day.
I don't think they fully understand yet what they did today, but I hope one day they will. I hope they know that their voices matter, that showing up matters, and that sharing your story can help create change.
Thank you to Connecticut Children's for giving our family the opportunity to be part of such a meaningful day. We are grateful, honored, and proud to keep showing up, not just for Carter, but for all families navigating disability, caregiving, and the pursuit of inclusion.