Smith Magenis

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Richelle is now a member of Smith Magenis
Sep 8
Beth Haymond posted a blog post
Sep 6
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Sep 5

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Desiderata
by Max Ehrmann (1927)

Go Placidly amid the noise and haste, & remember what peace there may be in silence.

As far as possible without surrender be on good terms with all persons.

Speak your truth quietly & clearly; and listen to others, even the dull and ignorant; they too have their story. Avoid loud and aggressive persons; they are vexations to the spirit.

If you compare yourself with others, you may become vain & bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity & disenchantment it is perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue & loneliness.

Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees & the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive Him to be, & whatever your labors &aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery & broken dreams it is still a beautiful world. Be cheerful. Strive to be happy
 



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after waking up 1 Reply

Started by MAMI MANEI in SLEEP ISSUES. Last reply by Kristina Way Aug 25.

Hello There! 7 Replies

Started by Megan in FEELINGS AND EMOTIONAL SUPPORT. Last reply by Chelsea Massey Aug 25.

Abilify 13 Replies

Started by Kelly Seaman in MEDICAL ADVICE AND EXPERIENCE. Last reply by Stacey Collins Feb 11.

need he l.p. 1 Reply

Started by tara wade in MEDICAL ADVICE AND EXPERIENCE. Last reply by Jessica Kirklin Feb 10.

Melatonin Patches 7 Replies

Started by David Crawford in SLEEP ISSUES. Last reply by Jennifer Haroldsen Jan 24.

Traveling with your SMS child 2 Replies

Started by Beth Haymond in MEDICAL ADVICE AND EXPERIENCE. Last reply by Beth Haymond Nov 3, 2015.

night awakenings and safety 12 Replies

Started by Vickie Fischer in SLEEP ISSUES. Last reply by Vivienne Monos Oct 25, 2015.

Any SMSers have dentures?

Started by Nancy Grant with Ben in MEDICAL ADVICE AND EXPERIENCE Oct 3, 2015.

SMS Research - Parents Needed 1 Reply

Started by Erin Corbett in FEELINGS AND EMOTIONAL SUPPORT. Last reply by Jessica Kirklin Aug 24, 2015.

Summer Davies. 1 Reply

Started by Bob Davies in FEELINGS AND EMOTIONAL SUPPORT. Last reply by Jessica Kirklin Jul 22, 2015.

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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/







 
 
 

Taylor Bug Kisses Foundation

The Taylor Bug Kisses Foundation kindly sponsors our website fees. If you wish to make a donation to the foundation click below  www.taylorbugkisses.com

 

International

International SMS Map

Salli and Nick Hunt started and maintain an international SMS map to help connect families around the world. Please visit the `International Map for SMS' group to add your details.

SMS Research Foundation - The US based Research Foundation - 

 www.smsresearchfoundation.org

Blog Posts

The Blurry Line Between Syndrome and Personality

Posted by Beth Haymond on September 6, 2016 at 5:58pm

Meeting with Other SMS Families

Posted by Beth Haymond on May 29, 2016 at 4:19pm

Meeting with the Geneticist

Posted by Beth Haymond on April 18, 2016 at 4:40pm

Savant Syndrome Stereotype Misrepresentation

Posted by Beth Haymond on March 22, 2016 at 6:17pm

Websites for Individual Children

SMS Fundraising

www.taylorbugkisses.com

Taylor's Website www.freewebs.com/taylorsms
Grace's Website http://www.graceriddell.com
Sydney's Website
www.strengthforsydney.org
Sienna's Website www.siennasteps.com
Nico's Website
www.nicosjourney.webs.com

Mack Attack

www.facebook.com/mackattacksms

DISCLAIMER No information posted is intended to, nor does it, constitute medical or other advice. Always consult your medical doctor before acting on any information you have read.

Welcome to Holland" By Emily Perl Kingsley, 1987

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


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