An Extra Chromosome

Three years ago we were blessed with an amazing bundle of joy, our eldest son, Charlie. He has strawberry blonde hair, blue eyes, and the cutest chubby cheeks you have ever seen. He also has Down Syndrome.

Down Syndrome is when a person is born with an extra copy of the 21st chromosome. This extra chromosome, which we like to refer to as the “love chromosome”, comes with many challenges, but mostly many joys. It’s these joys that I hope people walk away with after meeting my Charlie or another person living with Down Syndrome.

Charlie is just like anyone else, he may just take a little longer or need a little more assistance when compared to the average person. A common saying in the Down Syndrome community is “we are more alike than different.” If people open their eyes and their hearts wide enough, they will find that to be true.

Although we celebrate Charlie’s differences every day, Down Syndrome is recognized nationally throughout October. To raise awareness, cities across the nation commemorate by holding large walks. Jacksonville participates in one called the Buddy Walk, and this year, it will be held on Saturday, November 8th at the Sea Walk Pavilion in Jacksonville Beach. There will be games and food starting at 11am and lasting until 4pm with the walk beginning at 2pm. All of the money raised goes to the Down Syndrome Association of Jacksonville “DSAJ” to help better the lives of individuals with Down Syndrome.

The Buddy Walk is the biggest fundraiser of the year for the DSAJ. It’s important to us, not only to recognize how wonderful our son and his friends are, but also because the funds raised through the walk help fund therapies, sports programs, community and parent outreach, and so much more. The DSAJ uses every penny to improve the lives of those with Down Syndrome.

We see these funds put to use firsthand. Unbeknownst to some, people with Down Syndrome have low muscle tone and need various therapies. My son has been in occupational therapy, speech therapy, and physical therapy at least once a week since he was five months old. This may sound daunting, but it honestly becomes routine, and the therapists become like family. With the proceeds raised through the Buddy Walk, the DSAJ can help fund some of these therapies.

My husband helps coach the DSAJ’s soccer league. This year will be Charlie’s first year playing. Each child receives their own uniform and plays each weekend for the entire soccer season. The DSAJ forms this league and will provide financial assistance to families that need it so their child(ren) can participate.

Parent and community outreach through speakers and various seminars have been very helpful for our family. Whether it is medical professionals, financial advisors, educational advocates, or even weekend seminars dedicated to helping those with special needs, the DSAJ has either sponsored the speakers or supported the families for the weekend seminars. Each presenter provides more insight into how we as a family and as a community can better the lives of our children.

I read a great quote from friends of a young man with Down Syndrome who won Homecoming King at their high school. “He doesn’t have an extra chromosome, we are all just missing one.” My desire is that everyone feels this excited to celebrate our differences. Please consider attending the Buddy Walk or getting involved in programs with special needs. You will always leave in a better mood than when you first arrived. For more information on the Buddy Walk or the DSAJ, please visit www.dsaj.org.