Today, my son’s steroid inhaler broke (my husband somehow smashed it in the trunk of the car). I was so upset that we would have to shell out yet another 100 dollars to get a new one, and that’s when I went to get the mail and saw the bracelets. I became excited, and my day had suddenly become okay. The R.A.R.E. Project 7000 Bracelets for Hope™ program gave me that glimmer of hope I needed.
We have yet to find anyone else with the same deletion as Connor, and he takes life with stride. I am so proud to display this bracelet in honor of him and in the hopes of raising awareness of chromosome 21q deletion.
A chromosome 21q deletion is a rare genetic condition, where a part of the genetic material that is typically present in the body’s 46 chromosomes is missing. Depending on the specific genetic material missing, the risk of birth defects, developmental delays and learning difficulties become increasingly prevalent.
Connor struggles daily to do what I can do with ease, like eat with a spoon, but my boy is braver then I will ever be. If wearing a bracelet will help raise awareness and hopefully bring on more genetic testing and research, then I say it is the least I can do.
Connor refuses to wear anything on his face or hands/wrists, so my husband has decided to wear the friendship bracelet in his place. It is with pride I wear this bracelet for Connor.