Colby Shmuler

What makes Colby Xtraordinary to you?

We wanted to share a life long success story of our son, Colby age 21, who was diagnosed at age 1 impacting our lives forever. At that time, we cried for years but finally after the tears stopped the proactive plan began. We raised him as normally as possible with expectations and teaching him daily skills from cooking, tying shoes, riding a bike (by velcro-ing his shoes to the pedals) learning to speak a word at age 2 and very slow steady progress since then. Then in his teen years he would walk to the bakery about a mile from home to buy a single role with $1 and walk back. We would receive calls from concerned neighbors asking if he needed help and was ok to do this on his own. We always pushed as much independence and life skills as possible with these types of chores. The first time he went to buy bagels I sat in the car for about 20 minutes watching him let people pass since he was on the side of the line to order and didn’t really know how to do it. After watching struggle for so long the line dissipated and he made it to the counter and ran out of the store smiling after ordering and paying for his everything bagel. These are just snippets in our memory but now at age 21 the greatest milestone of all is upon on. Through initial contact and support of the school district which he is now no longer part of he has held a warehouse job loading and sorting boxes for almost a year. A few days ago on November 1st he moved into an apartment with a roommate in a regular building about 10 minutes from our home. He has slept 3 consecutive nights there and we are still alive and so is he. This story is meant for those with little ones that cannot speak or maybe even walk. There is a bright light of opportunity ahead. Get moving with all of the therapies and push and challenge your X-man or X-Woman they have it in them. At age 21 he speaks in about 5-7 word short sentences and cannot really tell you a full detailed story. But he can load the dishwasher, take out the garbage on scheduled days without reminder and take an uber to and from work. This is our amazing story of Colby.

Special Facts

Playing basketball (he is in his 2nd year of special olympics), watching Seinfeld or Guy Fierri Diner’s, Drive-Ins, and Dives on Food Channel, going out and socializing with people he is LOL funny

How has the NFXF helped you and/or your family?

We’ve been part of this community since the beginning when we thought maybe a cure is 5-10 away, but now 20 years later we see that a genetic therapy may be on the horizon we all need to keep pushing. Awareness, support, and shared stories have alwasy been great.