Maddy goes to Washington!

As we announced in our blog back in September 2023, Maddy was selected to represent the Children’s Hospital Colorado as an ambassador. Each ambassador is encouraged to tell her own story and why the hospital is important to them. Maddy chose to raise awareness about Rett Syndrome and specifically the Rett Clinic!

Read what her mom, Amy Cummins, told us about Maddy’s experience: 

FEARLESS…. The definition of our daughter Maddy. Matt, myself, and nurse Jenna were privileged to accompany Madelyn to Washington D.C. last week for Family Advocacy Day on Capitol Hill. Maddy is in her second year as a patient ambassador for Children’s Hospital Colorado and was recently invited to represent our fine hospital and state on a national level with the Children's Hospital Association. We were one of 41 families representing 32 Children’s Hospitals nationwide. 

Within two days, we met with every single Colorado Legislator’s office to advocate for Children’s Colorado. Maddy used her communication device to share her story of life with Rett syndrome, the importance of continued Medicaid services, improvement needed for mental health in children, and continued funding for pediatric specialists (by the way, Maddy utilizes 12 specialists), Rett Clinic and the importance of continued rare disease research and high-cost drug funding (Maddy participated in a newly approved Rett syndrome medication drug trial for the last four years, this newly FDA approved single medication costs $759,600 a year). Every single topic Maddy advocated for has a personal impact on her life and the lives of countless patients at Children’s Colorado. This was a jam-packed two days of meetings, interviews, conversations, and connections. We had two excellent team members from Children’s CO at our side for this trip, Zach Zaslow and Rebecca Dubroff. They cared for and supported our family on this unique journey. Maddy definitely made a splash on The Hill by telling jokes, sharing her personal journey, and maybe even a few pickup lines 🤣 using her Tobii communication device. Matt and I were in absolute awe watching our severely medically complex, non-verbal daughter warm the hearts and open minds of countless staffers, legislators, interns, and everyone she met with. 

As you can imagine, this wasn't an easy trip for her, but she insisted on going and wanted to do her part to support the hospital that has changed our life. Children’s Hospital Colorado and the Colorado Medicaid program have provided her with countless care and benefits over the past 10 years. We would not be able to care for her as well as we do without their support. Pushing a wheelchair through the airport, with our medical supplies and medications, dragging a large amount of luggage, being screened the nth time, praying her wheelchair would meet us on the other side, finding areas to provide personal care in the halls and restrooms (that are not equipped for non-standing adults), trying to anticipate the medical supplies/cares that will be needed, running through rain showers with an umbrella and wheelchair. The list goes on and on,... all this to say it was worth it 100%!!! She rallied for every single meeting and conversation, was engaged, and honestly stole the show and many hearts.

The Children’s Hospital Association greeted us with open arms, hosting a fantastic two-day event with lovely and appropriate accommodations/transportation, yummy food, informative meetings, and most importantly, a wonderful celebration of their ambassador families! Maddy danced the night away with Uno Dos Tres Andrés (a great Grammy award-winning musical group) superheroes, balloon artists, ice cream carts, and much more. She literally fell asleep that night with a smile. It was nice to connect with other families that share and understand our complicated life. 
We are honored and excited to have been chosen to represent Children’s Colorado for Family Advocacy Day 2023.  Until next time!

Amy Cummins,

Maddy’s Mom

Maddy’s story was even picked up by CPR! Read the CPR article by clicking the button below. You can even listen to Maddy using her Tobii device by clicking on the orange button in the upper right corner.