So many people in our life ask to keep updated on Parker so I put a post on Facebook yesterday letting everyone know that Parker was going in for the various procedures. It was so wonderful and comforting to see the "likes" and "comments" and knowing how many people were thinking and praying for Parker and our family. We are truly blessed!!
Following his procedures I put up a post with updates on how his day was and again we were flooded with love. This is why I appreciate technology and the modern age so much. I can absolutely say that if we were going through this exact same experience many years ago that it would've been much more difficult. We can instantly update our friends and family about what is going on and receive instant feedback and support. We have loads of information at our fingertips and have so many resources available to us.
I also love that the internet and Facebook has allowed me to connect with so many families around the world that are going through very similar situations as us. There may be no one with the exact same deletion/diagnosis as Parker but there are people with similar diagnosis and similar situations. It's been so valuable to me to be able to connect with these other parents and share our stories, struggles, joys, and information.
The Chromosome 6 group that I am a part of on Facebook also alerted me to a new research study that is being conducted out of the Netherlands that is dealing specifically with deletions on Chromosome 6. This study probably would not have happened if our Facebook group did not exist. It allowed the researchers to see that there are in fact many people out there in the world that have a 6q deletion and as our group can attest, those numbers are growing everyday. The groups size and the active involvement of the members have shown the researchers that it is worth their time to spend the effort finding out more about these deletions.
The researchers will probably never meet the subjects in their research face to face but through technology we can communicate and pass the needed information along. How wonderful is it that a research study can be done with people from all around the world and no one has to leave the comfort of their own home to participate? This study won't change anything for Parker but it will hopefully gather more information that will be highly valuable to others in the future. I'm immensely grateful for internet-based support groups like this and active parents who seek out all the information they can get. What an exciting time!!
And as an added note, I'm also grateful that information can be sent electronically because I can't imagine how much it would cost to send all of Parker's medical records to the Netherlands by mail!!
|These are just the medical records I have printed off, the rest are on disk!|