Holly

Hometown:

Canton

Last seen:

Voting in the Primary Election

My story:

I am the proud parent of two children with Fragile X Syndrome. My son Parker competes in the Special Olympics and has a great sense of humor. My daughter Allison is a go-getter and relishes horseback riding. They both require 24-hour care but are always smiling. They play basketball and baseball, ride bikes and go fishing. When you look at them with the other kids in the neighborhood, they blend right in. Having my children diagnosed with Fragile X has changed me as a person. I went from being a shy mom to a vocal advocate who has traveled to Washington D.C. to address Congress and work with Congressman Phil Hare on the needs of people in our developmental disability community. I recently organized a neighborhood walk to benefit Fragile X research. It has also changed the hopes and dreams we have for our children. I took a while to acclimate to comprehend the challenges that were laid out before us. People can be cruel and they do not always understand. It can be hard.

Why I advocate:

The first school meeting I attended for Parker made me want to become an advocate. I realized that you have to fight for your child to get the services he or she is entitled to. It’s not a given. When you have a child with a disability, you look at the future differently. I’ve learned the more you get out there and use your voice, the more likely will see a difference in your child’s future. The more you reach out to other people, the more they reach out to you.

LifeMyWay means:

Independence is important to our family. I want them have the opportunity to reach their potential. I think Allison will go to college, get married and have a full time job one day. I know it will be challenging but I think she can make it happen. I hope Parker can have a house in our community with some of his friends, and we can arrange for the help he needs for some parts of the day. We just want him to have the chance to be as independent as possible and be a productive member of society.

My video: