Meet Tyler: 2021 Family Advocacy Week Champion

Tyler is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Tyler and his family will discuss his health journey, Gillette Children’s Specialty Healthcare’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Tyler.

In April of 2015, Tyler was diagnosed with Duchenne muscular dystrophy (DMD), a severe type of muscular dystrophy that primarily affects boys, at 2 years old.

“We hopped around to other providers in the area and felt the most comfortable at Gillette,” says Marilyn, Tyler’s mother. “We receive top notch care. The providers adore Tyler and give us so much hope.”

Tyler and his family live each day to the fullest by prioritizing quality time and socialization. There are no treatments for DMD, but Tyler is on a daily steroid to help preserve the muscles he does have.

“He misses out on a lot due to appointments and his physical abilities,” says Marilyn. “We get really creative with activities and unfortunately most activities through the school district and city don’t provide adequate support for him.”

Now 9, Tyler has suffered a few setbacks due the COVID-19 pandemic and not being able to receive the same quality of care. His activity level decreased through the pandemic and cold winter months.

In his free time, Tyler loves playing video games like Minecraft and Roblox, playing with his dog and being outdoors.