The Pittsburgh VisionWalk is a team effort for the Watkins family! Team Watkins is Mom Emily, Dad Graham, Brother Aiden, and Sister Maddie. They have been involved in the walk since 2013. Maddie, who will start kindergarten in the fall 2017, has Usher syndrome type 1D. People with this type of Usher syndrome are typically born profoundly deaf and experience progressive vision loss due to retinitis pigmentosa.
“We decided we couldn’t just sit around and wait for Maddie to go blind,” says Emily. “We had to be proactive. Since we can’t discover the cure or treatment ourselves, we figured the best way to help Maddie would be to raise awareness and money for research.”
The Watkins’ family team is called Maddie’s Marchers. The team is one of the Pittsburgh walk’s leading fundraising groups.
According to her mom, Maddie is a typical young girl. She loves playing with Barbie dolls, Legos, and her brother. Her favorite Disney character is Rapunzel. Maddie uses bi-lateral cochlear implants to hear and speak. She has a fantastic imagination and is a great artist. She takes dance lessons and plays on a soccer team.
“Our hope for the future is that Maddie never loses her vision. She has good vision at this time. We want there to be a treatment for her vision loss before she needs it. That’s our hope for Maddie and for everyone who is losing their vision due to an inherited retinal disease,” Emily says.