Clara's Travel Bug Dog Tag

This is clara's trackable...

I have two daughers who both have trackables, they both want to see how far there trackables can travel.

Please help by moving this trackable on for us, its not a race, its just for fun, both are keen to see where they end up on their travels.

Clara has a rare condition called Smiths Magenis Syndrome.


WHAT IS SMITH MAGENIS SYNDROME? (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).


Useful Websites
PRISMS http://prisms.org/start.htm
Smith Magenis Foundation UK http://www.smith-magenis.co.uk/
SMS Fundraising Websitey www.taylorbugkisses.com

Thank you for taking the time to read this, have fun & bless you

Clara's Dad

No additional details available.