A friend of mine has an adorable son who right now is trying to understand why cars are moving so quickly, why the buildings are so tall, the lights… there is so many lights, the sounds…..Mommy make them stop. As I type this post, he is experiencing sensory overload and his Mom is doing her best to calm him, all the while knowing she is exhausted. Her heart pumps like thunder with the occasional strike as she tries to slay the many dragons that are coming at him and convince him everything is okay. At the end of the day as his tired eyes finally close, the noise is quiet, the sights and smells go away; she takes a moment to breathe.

 

Her son, Mr. C as she likes to call him, has a variety of chromosome disorders: Chromosome 15q Duplication Syndrome (Dup15q), 17q and 3q23. Seizures, cognitive delays, behavioral problems, fine motor delays, anxiety, sensory processing, speech, language and even sudden death are some of the many characteristics of children like Mr. C.   He is the only documented child in the world known to have 3q23 Chromosome Syndrome. As I type that, I can’t imagine how terrifying that must be for his mother and father. Mr. C is too young to understand.

 

Recently a community got together to raise funds for Mr. C and Therese to go to a clinic at Massachusetts General Hospital in Boston where Dr. Ron Thibert conducts his research and clinical management of this syndrome. This week, Dr. Ron (as Therese so fondly calls him) is providing a consult to come up with a plan to manage Mr. C’s symptoms.

 

Over the years, I have watched my friend battle her own dragons. I always talk about how the system fails so many of our children. The fact is it’s not just one system. Our fights for our children are numerous. Therese fought for someone to hear her, to see what she was seeing, to acknowledge her concerns. She fought for services, funding and all the other things that parents of children with special needs are forced to fight for.

 

I know there will still be more dragons to slay but Therese has more fire in her than any other dragons. I’m so proud and happy that Therese and Mr. C have found their way through the maze, fought the dragons and reached the castle. I hope they are richly rewarded.

 

To follow their journey click here.  For more information on Dup 15q click here.

 

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(Wheel-ist-ic) Adj: awareness or acceptance of actual fact, real existence, or truth with relation to inclusion, accessibility and/or persons with disabilities.

Let’s Be Wheelisitic is a blog designed to open communication, share and create change through parenting, awareness, inclusion and advocacy. Over the years people have encouraged me to use my voice and experiences with my daughter to help others with or without disabilities, or parents of children with disabilities. This blog is my way of doing just that. I hope you will find this site enjoyable, educational, helpful, and rewarding.
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Life is what happens to you when you’re busy making other plans — John Lennon

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