On September 8, 2006, my wife and I were overjoyed to welcome our second daughter Hailey to our family. Her entry into the world, however, would not be a smooth one. When Hailey was supposed to be coming home from the hospital, we found ourselves following an ambulance that carried her to Massachusetts General Hospital for observation and evaluation due to “difficulty feeding”. Over the next four days of NICU vigils and wondering what was wrong with her, we found that Hailey had Trisomy 13 Mosaicism. Simply put, we were told that some of her cells have an extra 13th chromosome. Thus began our journey into the world of parents who have a child with a chromosomal disorder.
Fully Trisomies (such as with Down’s Syndrome (Trisomy 21), Edward’s Syndrome (Trisomy 18), and Patau’s Sydrome (Trisomy 13) can mean a range of developmental disabilities and congenital defects, too frequently resulting in the death of a child. Children with Mosaicism have an increased range of variation in outcome, which depends on a host of factors (many of which are still not fully understood). We were told that no one knows what the outcome of Mosaicism would be for Hailey, with potential impacts ranging from insignificant, to exceptionally mild, to severe, to deadly. Little research exists on Mosaicism, and no answers could be given. In short, we were given a diagnosis with no prognosis. While we hoped for the best, we also expected the worst.
Fortunately for Hailey, she has experienced only minor health impacts and has been developing relatively on track for her age. Through physical therapy and her own hard work, she continues to thrive and in most ways resembles any child that has 46 chromosomes! Regardless of her outcome and development, she is unique and possesses wonderful qualities, such as a great smile and infectious laugh. It often is said, and always is true, that every child with a chromosomal condition has a way of teaching those around him or her how to approach and appreciate life. The same can be said for Hailey. One of the meanings of the name “Hailey” is “hero”, and nothing could describe her better.
Inspired by the strength and determination of Hailey and others with chromosomal conditions, I decided to train for and participate in the Ironman Lake Placid. While I have been doing triathlons for two years, the Ironman distance never had much attraction for me. However, after hearing about the Janus Charity Challenge, doing an Ironman race seemed more worthwhile if I could use the Ironman (2.4 mile swim /112 mile bike / 26.2 mile run) to raise money and awareness of Trisomies and chromosomal conditions.
The charity I partnered with then was Noah’s Never Ending Rainbow, an organization whose mission is “to educate, advocate, raise public awareness, promote strategic alliances and assist families who have children with Trisomy and related chromosome disorders.”
For 2009, I am raising money for Minute Man ARC for Human Services. Since Hailey was 3 months old, she has been receiving Physical Therapy, and later Occupational Therapy, through Minute Man ARC. They have helped make Hailey the girl she is now, and helped to greatly enrich the life of our family.
In the end, my wife and I are in the same position as all parents in that we do not know what the future will hold. The major difference is that while most parents can live in the comfort of assuming their children will be fine, we have had to build the hope that Hailey will be healthy and happy. The uncertainty associated with Trisomies and chromosomal conditions often is the hardest thing to take. Organizations like Minute Man ARC are there to help families and people who need assistance with a variety of developmental delays, help new parents deal with these uncertainties, provide information for medical staff unfamiliar with these conditions, and create support for those who become immersed in this new world.
I hope that you will consider donating to my Ironman race and supporting Minute Man ARC and the work that they do, . To make a donation, follow these instructions:
- Go to Janus Charity Challenge Athlete Search page
- Search for (first name) Gary / (last name)David
- Click on my name
- Follow the donation instructions
Or you can go to http://januscharitychallenge.kintera.org/lp09/garydavid.
If you have any problems making a donation, you can contact me at gcdavid(at)yahoo(dot)com. Thank you and take care.