Julie and Kevin Peters: Helping the National Fragile X Foundation
By Kevin & Julie Peters
Oswego
We are Kevin and Julie Peters, and we live in Oswego. We are running to raise money for the National Fragile X Foundation.
Our 16-year-old son, Colin, has Fragile X Syndrome, the most common inherited form of mental impairment in the world. It affects a protein on the X chromosome.
Colin is a wonderful child who is mentally challenged and nonverbal with autistic behaviors. We have learned to cope with and grow from Colin's disability over the years, but, like most special-needs parents, we worry about his future.
Researchers know what causes Fragile X; we are hopeful that a treatment might be found that could make Colin more independent and less vulnerable in his adult life.
For now, we see the beauty and joy that our son brings to us and just about everyone he meets. He is learning to communicate with assistive technology and to manage his anxiety and aggressive behavior. That's the hardest part about Fragile X for us, and for him.
We are also running to honor Julie's father, John Kunzie, who suffers from Fragile X Tremor/Ataxia Syndrome (FXTAS). He is a carrier and suffers from symptoms similar to Parkinson's disease. Julie and her biological sisters are also carriers. Female carriers often experience issues with infertility and premature ovarian failure.
FXTAS is becoming more of a challenge for Julie's father. Although some of this might be the result of aging, problems with balance, tremors, and memory are increasing. Little research exists to predict whether female carriers will also develop FXTAS later in life. That's been on our minds lately as we think about the future.
Running is new to both of us. We've done a few 5Ks, but training for a half marathon has given us both an experience and an identity that isn't defined by our role as special-needs parents.
Because of Colin's behavior challenges, our world sometimes seems very small. We don't vacation. We don't really have hobbies. It's hard to participate in school and community activities.
Running has given us a chance to get outside, get in shape, and get back to doing something that's just for us personally, and as a couple.
We will also have the honor of running with Dr. Elizabeth Berry-Kravis, a pediatric neurologist at Rush University Medical Center and one of the world's leading Fragile X researchers.
The only advice we have for someone who is thinking of doing this marathon is to start small and put one mile in front of the other. Training takes time but there's a lot of power in looking back at where you started and being able to say, "I did this." Watching the donations come in is also so powerful and encouraging.
If anyone would like to donate to our cause, follow the link on our fundraising page at: https://www.crowdrise.com/xtramilersrunningfor/fundraiser/julieandkevinpeters
Our local organization, the Greater Chicago Fragile X Support Group, will receive a portion of the proceeds for educational opportunities, outreach, and support for families dealing with Fragile X.