Getting Involved

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I’m the type of person that would rather fit in instead of stick out. I don’t mind things being status quo and if my boat doesn’t rock that’s fine by me. Then I had kids. With each new addition I became bolder, stronger, smarter, and more willing to ask for help. Ben certainly has helped me perfect and fine tune those skills. When you have a child with special needs you can either sit back and wait for help to arrive (trust me, it does not show up!) or you can get up and start doing your research. When I left the hospital with Ben after his first surgery I was completely on my own in understanding and caring for him. At 5 weeks old he had no voice because he had a paralyzed vocal cord, he had a feeding tube because the vocal cord should close together when you swallow to protect your airway, round the clock medications one of them being a heart rhythm stabilizer, twice a day injections for a blood clot which obstructed his leg all the way up to the bottom of his heart, and had yet to gain much past his birth weight. I knew there must be some sort of help for him to develop, grow, and thrive. I started with the Regional Center and Early Intervention. They were able to help provide services such as physical therapy, occupational therapy, education, and support. Eventually I was able to find an advocacy group called Parents Advocating Together (patsd.org). They were able to help me understand what Ben should be eligible for and gave me the confidence and skills to pursue speech therapy. Now that I feel a bit more independent I stated this website. Ben also has a profile on mygene2.org. It’s a website where you can register your child’s gene mutation and list their symptoms in order to find someone else with the same affected gene. I also started the application to participate in the Undiagnosed Disease Network, rarediseases.info.nih.gov. Their goal is “to improve diagnosis and care of patients with undiagnosed diseases”. On ward and upward.

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