Smith-Magenis Syndrome

Hi I am a 56 yr old single mom who adopted a drug exposed boy from Denver Co and live in Aurora. We are involved with developmental Pathways which is funded thru a federal grant called Child Find. They can evaluate your child if there is any developmental delay and may offer support. Childrens Hospital is another great resource. I am sure you are very familiarr with them with your older son. I am an RN tho not in Peds, and amnot familiar with childrens syndromes very much. Congradulations on being such a special mom!

My youngest son has demosier's syndrome (also known as septo optic dysplasia) and is also blind. Ask your doctor how to get in touch with the infant toddler program. They've been awesome as far as providing therapists, etc. for my little boy. Just know that there is help out there. I was so overwhelmed when I found out about my son's diagnosis. I don't know what I would have done if someone hadn't pointed me in the right direction. Best of luck.

Hello! I have an 11month old with chromomal disorder Trisomy 21, aka Down Syndrome. I highly recommend you join Parent to parent list serv covering the state of colorado (a free yahoo group). It is a place to get support, info, recommendations for docs and advice... all members are special needs family. Also there is a lot of humorous posts on there...

There is a wonderful support network of our families, and I hope you will go to this website, read about it and hit Registration to get on list serv. You can also request a one to one match, where the director will connect you with other familiies with your child's diagnosis. It is priceless to see other kiddos and get info from people "walking the walk"/

website link http://p2p-co.org/index.htm

Also, I highly recommend two pediatricians who specialize in chromosomal disorders at Childrens hospital Dr. Ellen Elias and Dr. Laura Pickler at main hospital in Aurora Colorado. They are wonderful-- both are genticists and also developmental pediatricians. Also, did you get an eval through your county's community centered board? they provide free services like therapies and even can pay for classes and trainings for you to help your kiddo!

If you let me know your county, I can tell you who to call... And if you want to call me, feel free. Congratulations on your baby!!!!
M. ###-###-####

My heart goes out to you and your family. I will keep you in my thoughts and prayers that everything goes better for you and you get in touch with the right doctors. sounds like you have had a tough journey.

Best wishes,
N. Zayhowski

Hi A., Yes, I have a 3 year old daughter with this syndrome. I did a double take when I saw your posting, because it is such an uncommon syndrome (i'm in Montana, and there are only 2 others with it in the state) We found out when she was 8 months old. I'm sure you've found the prisms.org website - it's got great info on it, but don't read it all at once, because it's overwhelming, and there is a good chance that your child likely doesn't have all the symptoms. Our daughter is just beginning to speak, but she has picked up at least 400 words in sign language, so if you haven't already, that's a great way for these kids to communicate. She's walking, but because of her low muscle tone, is behind in some gross and fine motor skills. She seems very bright, and loves people. If you want someone to talk to, my email is ____@____.com.

There is a wonderful group (email) in Colorado called Parent-to-Parent at http://www.p2p-co.org/ P2P is especially for parents whose children have some sort of special need. Contact them and they will introduce you to other parents of children with Smith-Magenis syndrome. Email or call toll free at 1-877-472-7201