Kristy Holder

Eight years we got the call that Weston’s genetic testing came back showing a missing part of his 18th Chromosome. We were heartbroken and had no idea what our future held. Our Doctor and my persistence got us an appointment with the Genetics Doctor within a week (4 month normal wait) where they handed us a thick packet of information from the Chromosome 18 Registry and told us that he was 1 in 100 people with 18p-, gave us a wide range of what to expect for his future, and sent us away. We were scared. The what if’s and the unknown are always so scary. We walked out not knowing what to think or what to do but knew we would conquer this. We knew Weston would do BIG THINGS and that is all we were going to accept!!

The past 8 years, Weston has had quite the amount of hurdles to get over from feeding difficulties, development and speech delays, growth and more. Rarely did we directly relate them to his Chromosome deletion. These past4 years have changed our minds. We happened to find a social medial group that is specifically related to his deletion (18p-) and began to scope it out. I came across a picture of a boy that looked very similar to Weston. It took me by surprise because it was a first. I kept reading and many of the posts were some of the same hurdles that we had already gone through. It was jaw dropping. That is when I realized that I needed to get more involved and become more comfortable spreading awareness about our sweet Weston. I was constantly turning to the Chromosome 18 Registry & Research Society and now I knew why. Not only is this organization there to help, support, fund and research kids just like Weston, but they also get the newly gained knowledge back to the families, Doctors, teachers, and the public! We were one of those families that have been so thankful for everything they do. Since becoming more involved, The Registry has been a part of our family life like we would have never guessed. We’ve met families that share the same problems, offer solutions, and share successes through various means of communication. Meeting these families has help guide us in various ways to continue to make Weston the best he can be. It has truly blessed our family and Weston in so many ways. Weston(9) is currently doing great in 2ndGradeat a special school in Houston. We know he has BIG plans!!!