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Over the years I have served on multiple committees, hosted fundraisers, and most recently joined the PRISMS Board. To tell you the truth, being a PRISMS volunteer has been such a blessing. While I am always happy to do my part to help the community, I never realized how therapeutic it would be for me. Not only has it helped me cope with the SMS chaos in my life, but it has introduced me to some of the most amazing people I know. SMS parents and warriors who are doing all they can to better the lives of people with SMS.
Kevin Sperry didn't realize the neighbor boy from down the street, who knocked on his door over 5 years ago and asked if he could go for a walk, would become his best friend. That best friend is Coulter Daniel.
Caring for a child with Smith-Magenis Syndrome most likely will be the most challenging and rewarding job you will ever have. You might feel as if you are the only person who can do the job and doubt that anyone else could meet your child’s needs the way you can. There is only so much you can give before you will begin to feel mentally, emotionally and physically drained. It is a necessity – not a luxury--to find the support you will need to care for you and your family. Remember, you are only human and it is important to take care of yourself physically and emotionally.
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