You never know what is going to become important to you in life until it does. Before we had Finn, I rarely heard of other parents having children with rare syndromes and now that at I am a parent of a child with two rare syndromes, I have a whole new understanding of how many parents there really are that have faced or are facing similar situations. There are probably hundreds of thousands of sleep deprived parents out there spending hours trying to figure out what should go in their child's IEP, battling it out over the phone with health insurance companies, or crying tears of joy because their child just said something that sounded like "towel" as he or she pointed to a hand towel. Some of these parents have become some of my closest friends.
So, guess the whole point of Awareness months are to make people aware. The thing that I want people to know about Finn is that he is not too much different than any other three year old. He is smart, has a great memory, is funny, mischievous, and curious. He likes trains, cars, being outside, books, and art. His favorite foods are cookies and more cookies. He likes music, dancing, and both loving and pestering his sister. He may not be able to tell you what he knows, but he can show you. Finn has been through a lot in his three years and it has made him tough, but he still likes to hold your hand and cuddle. Finn wants to be loved and liked by his peers just like any other child.
Trisomies (other than Down's Syndrome) are so very rare and some are simply "not compatible with life." There are two other children with Trisomy 9p (that we are aware of) that live in Florida just so you get an idea of how rare the syndrome truly is.
There are a ton of support networks out there for parents with children with Trisomy. I belong to a chromosome 9 support group on Facebook.
My top three websites for information on Trisomies:
"SOFT" Support Organization for Trisomy http://www.trisomy.org. They have an annual meeting which we look forward to going to one of these days.
The Chromosome Disorder Outreach www.chromodisorder.org provides information to parents on their children's syndromes and can get you in touch with parents that have children with similar karotypes. This website also provides information on the specific chromosome including what genes are where.
Unique http://www.rarechromo.org is another organization that provides disorder leaflets and can help you meet other families across the globe.
There are many blogs to follow on individual journeys and other websites that provide some general information.
There are a lot of slogans out there for Trisomy Awareness. Here are some of my favorites :)
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