We know that this can be a very overwhelming time. We are here to lend you support and help you get through this process and your journey of Smith-Magenis Syndrome. Though there may be challenges for you and your family, please know that you are not alone. It is also important to remember no matter the challenges; your child is an individual person first and foremost. They each have their own individual personalities and their own needs. Your child has Smith-Magenis Syndrome but they are not their syndrome. Try to remember to see your child for themselves and not the list of characteristics they may or may not get due to Smith-Magenis Syndrome.
We also realize that it is not just your child that has to live with Smith-Magenis Syndrome it is the whole family that is affected. For parents, contact with other parents can be a helpful resource and an important support for your own healing. Parents wanting more resources or to talk to other parents, please contact us and we can put you in contact with other families. We are here to help in any way we can.
If you would like to be put in contact with another family we are happy to give you contact information. For more support there is a wonderful online support group created by a mom who has a son with SMS. It is a great support system! www.smithmagenissyndrome.ning.com
For siblings of individuals with Smith-Magenis Syndrome, spending time with other siblings of individuals with Smith-Magenis Syndrome may be a comfort. Talking to someone who is going through the same experience can help them understand they are not alone. There are siblings that belong to the online support group as well (along with grandparents, aunts, uncles, cousins and teachers of individuals with Smith-Magenis Syndrome).
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