In January of 2011, we received the diagnoses of a chromosome 18 abnormality. With that, the genetics counselor said with the research she had done, she was unable to find anyone in the world with the same breakpoint in the 18th chromosome that Ryan had. I was shocked…in disbelief. Where would I go next to find answers? Why us? Why my Ryan? Why my family after we had already been through so much!?
I was given a few websites. I was forwarded an email from someone at a research society. I was overwhelmed already as Ryan was still recovering from his first brain surgery (chiari) and I was in shock that he had yet another diagnoses shortly after surgery…epilepsy.
It wasn’t until about 9 months later that I started looking into the diagnoses of chromosome 18 abnormality…the thought of it and what it meant scared me. The curiosity of how I could further help my son was getting to me. I knew I had to advocate better and push him to grow. Especially since the seizures were getting worse. I had to know what the reason for them and all of his quirks were about.
I looked through the emails the genetics counselor had sent about the results of the genetic testing. That big long diagnoses of a blood test. The one that told us it was a chromosome abnormality in the 18th chromosome. The one that said there were differences but there is still so much hope.
Attached to the email she sent me which had Ryans micro array test results, there was email communication back and forth with Dr. Jeannine Cody.
When Britney decided she wanted to make the paracord bracelets in honor of Ryan and to save for the next conference, I had a really hard time saying no. We ordered the paracord colors she wanted and started plugging away making them. We had Brits friends and even some of our extended family helping to put them together. The bulk were made during the time if Ryan’s surgery and I was so thankful to have something to do that didn’t take a lot of brain power. I started to call it my therapy…
We donated $250 of what we have made from the bracelets to the Chromosome 18 Registry and Research Society, so far. We have the rest saved for a trip to the east coast for the chromosome 18 conference the beginning of July should schedules permit. If for some reason we are unable to make this trip, we will donate a bit more to the Registry and save the rest for the conference for summer of 2015 instead.
If you are interested in donating or wanting to see what size and color bracelets we have made, please shoot us an email and we would be so happy to send you what you’d like.
Thank you all again, for your support and love!