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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.
The PRISMS Professional Advisory Board (PAB) consists of 10 individuals representing the diverse needs of the SMS community. It is an internationally recognized group of basic scientists, educators, and clinicians with expertise in SMS, genetics, molecular research, education, speech, development, and caregiver and sibling concerns. Most PAB members are actively involved in research and/or clinical activities related to Smith-Magenis Syndrome.
Our son, Liam, 12, was nominated by his paraprofessional educator, Jane (who worked with him all through elementary school) as the Special Fester for Oktoberfest 2022. We have lived in La Crosse for 20 years and of course, we knew of Oktoberfest, but I had never really attended anything other than the Torchlight Parade. We didn't even know when he was selected for Special Fester that he had Smith-Magenis syndrome as we were still waiting on genetic test results. He was just diagnosed this year.
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