An online community for friends, family and people with SMS to share experiences, advice and to support each other

Upcoming Events:

Illinois: Taylor Bug Kisses Foundation 5k walk for SMS  (May 19)

Florida:  Sienna's Steps 5k for SMS Research Foundation  (May 19)

Owen is still up for adoption.  He lives on the Massachusetts/New York border and his family would like him to be adopted within the surrounding areas so they can visit him. He is 8 years old and has SMS.  If you can help please email shannon@taylorbugkisses.com

Gifting the Website to the Taylor Bug Kisses Foundation 

Hi all. Thank you for all your support over the last 3 years. I am gifting the website to the Taylor Bug Kisses Foundation as I just don't have the time to put into it anymore. Life of a single full time working SMS mummy : ) I'm sure Shannon will do an amazing job with the website. 

WHAT IS SMITH MAGENIS SYNDROME?

For the benefit of friends and family who have a person with SMS in their lives I have put together a brief summary. Please note that the summary is only my understanding of SMS ....

For medical and scientific information please refer to the links to various websites, academic articles and fact sheets set out below.

SMS

Smith Magenis Syndrome (SMS) is a specific pattern of physical, behavioural, and developmental features in a person. A person with SMS may have many or few of the features and the severity of these features may vary between individuals.

Typical Features

Typical SMS features include:

*endearing and engaging personalities
*characteristic facial appearance (i.e cupid’s lips, round cheeks)
*intellectual disabilities/challenges
*development delay (i.e. low tone, late walkers and talkers)
*ear and hearing problems
*vision problems
*sleep disturbances and early morning risers
*speech difficulties
*attention-seeking behaviour
*self-injurious behaviour (i.e. head-banging,biting, skin and nail picking)
*behavioural problems including frequent and prolonged tantrums

So friends and family you can see that SMS parents and caregivers have their work cut out for them; many are suffering from ongoing sleep deprivation and dealing with behavioural problems on a regular basis.

We love our children and they make us smile. But it can be very challenging to be a parent/caregiver of a child or adult with SMS, while also dealing with all the emotions that go along with having a special needs child and facing the prejudices that exist in society.

So if you want to help; give us the support that you would like if you were in our position, learn about SMS, offer us a break once in a while, wipe our tears or listen to us vent if we are having a bad day, stay in contact and don’t shy away.

Less common features

*heart defects and murmurs
*urinary (kidney) system problems
*scoliosis (curvature of the spine)

Why SMS occurs

SMS affects approximately 1 in 25,000 individuals. Most people with SMS have a deletion of genetic material from chromosome 17 and a smaller percentage of people with SMS have a mutation in the RAI1 gene (if you want all the technical information refer to the links below).

Sam’s geneticists explained to me that SMS occurs at the time of conception when the egg is copying the mummy and daddy’s chromosomes but it copies chromosome 17 incorrectly. It is not usually inherited but there have been a few cases.

Useful Websites

Taylor Bug Kisses Foundation http://www.taylorbugkisses.com

PRISMS http://prisms.org/start.htm

Smith Magenis Foundation UK http://www.smith-magenis.co.uk/

SMS Research Foundation http://www.smsresearchfoundation.org/

Pas a Pas Alexia (France)  http://www.pasapasavecalexia.fr/

Association Smith-Magenis (France) http://www.smithmagenis.com/

Smith Magenis (Denmark) http://www.smithmagenis.dk/