Concern over high incidence of Down syndrome in UAE

By Samir Salama, Associate Editor from Gulf News.com:
FNC members ask for incidence of Down syndrome to be cut down.

Abu Dhabi: Action must be taken to cut the high incidence of Down syndrome among Emiratis, which is double the global average and higher than the incidence in other GCC members, the Federal National Council told the government yesterday (Tuesday).

Dr. Amal Abdullah Al Qubaisi, a member from Abu Dhabi, asked Abdul Rahman Al Owais, Minister of Health, why the incidence of Down syndrome, a chromosomal condition which affects physical and mental development, among Emiratis is twice the world average and what action the ministry has taken to address the issue.

“How can the Ministry of Health explain this extremely high incidence of Down syndrome among Emiratis [one in every 319 births], compared to Oman [one in every 500 births], Qatar [one in every 546 births], Saudi Arabia [one in every 554 births] and Kuwait [one in every 581 births],” Dr Amal asked.

The condition is associated with delayed growth, joint laxity and incomplete organ formation, mostly of the heart.

The incidence of Down syndrome among Emiratis in Dubai is one in every 320 births, higher than the world average of one in every 800 births, according to data released in March by the Centre for Arab Genomic Studies.

Dr. Amal questioned the ministry’s coordination with other competent authorities, including the Ministry of Social Affairs, demanding utmost care be given to Down syndrome patients and their families. Dr. Amal also urged the Ministry of Health to set up specialised clinics in every emirate, providing free of charge medical services and reduce the charge for rehabilitation sessions to not more than Dh150 a session.

Dr. Amal said as many as 938 students in the UAE were patients with Down syndrome and asked Al Owais what was the total number of patients with Down syndrome in the country.

The Minister of Health said the global average was now one in every 600 births, pointing out that the incidence had grown with increased maternal age and high number of children.

He reviewed the ministry’s efforts including pre-marital examination for would-be couples and marital medical services. Al Owais called for concerted efforts to better educate members of the public about the condition.

Hamad Al Rahoumi, a member from Dubai, asked Al Owais about the possibility of opening clinics for Quranic healing.

But Al Owais said the Ministry of Health has nothing to do with faith healing.

Al Rahoumi said preventing imams from practising Quranic healing has led people to turn to sorcerers.

Etiquette, dance classes for students with Down syndrome are a hit

by Christie Lovvorn from AL.com:
Every Tuesday evening this year, the Icebreakers have put on their dancing shoes and gone to the Azalea City Center for the Arts where Ann Druhan taught them ballroom dances as part of the group's etiquette class. The young adult social and community service club of the Down Syndrome Society of Mobile County completed the classes June 8.
"We wanted to teach traditional ballroom dancing and etiquette skills to young adults with Down syndrome to help them gain poise and confidence when in social situations," said Lisa Gibert whose daughter Britt is a member of the Icebreakers.
"Our etiquette class covers the basics of a traditional etiquette class and provides extra time to learn and practice the skills being taught," Gibert said. "We also use methods used in drama classes such as role-playing, memorization, and improvisation to make the lessons fun, engaging, and memorable. The course includes lessons in ballroom dancing, table manners, and basic etiquette."
The classes, which averaged about 18 students all ranging between 18-30 years old, were part of a pilot program funded by grants provided by the Down Syndrome Society of Mobile County and the Global Down Syndrome Foundation. They were free to students with the exception of a $100 fee to offset costs for a dinner and a reception.
"I have taught them the proper dance positions, how to escort a girl to the dance floor, and a few other manners when at a social function," said veteran dance instructor Ann Druhan who also taught the group basic table manners and party manners.

SPECS4US providing custom frames for children with Down syndrome

SPECS4US was created and founded in 2004 by Maria Dellapina with over 25 years in the optical industry and the mother of a four-year-old with Down syndrome. She saw a definite need for this frame line. After two years of searching for an eyeglass frame to fit her daughter, Erin, Maria decided to use her knowledge as both an optician and mother to help Erin and others like her.

Erin's World™ is the frame line specially designed to fit children with Down syndrome superior to the typical frame. Unlike other frames, the bridge is adjusted to fit on their smaller noses and the temples (some people call them arms) are designed to help keep the glasses from constantly slipping. Erin's World frames are available in a variety of sizes and styles to fit toddlers to adults.

INFO@SPECS4US.COM or CALL 1-800-586-1885

Our Mission:
To improve the sight and quality of life for children with Down syndrome by providing custom frames that fit their unique needs.

SPECS4US has designed a frame specially designed to fit children with Down syndrome. With a pair of Erin’s World frames your child will no longer be constrained from their eyeglasses. They will be able to explore the world freely and clearly without wearing glasses that are too big or are constantly slipping down their nose. These frames are made with your child’s unique needs in mind and solve the problems that regular eyeglasses never could.


"We are so thankful for the people who help us have glasses that are JUST RIGHT for us! Thanks, Specs4Us!" ~ Lisa (Mother)


"Here's our "ballerina" Kiki on her way to our church's Fall Fest. After almost two years of LOVING these glasses, we're ready to buy a bigger pair! Thank you Specs4Us!" ~ Amy (Mother)
 
"Unlike before, Yzalea can now keep her glasses on, the whole day. Thanks for creating these wonderful frames, specifically made for our kids. Might order a new one soon, as a backup in case something happens to the one she's using right now. Again, thanks a million times." ~ Melissa (Mother)

All frames under patent

The Unfinished Child, a Story of Down Syndrome, Love, and Choice (and a Book Giveaway)

by Amy Julia Becker of Thin Places-Faith, Family, & Disability from Patheos.com:
Over the past month, I have had the privilege of corresponding with Theresa Shea, author of The Unfinished Child, a novel about two families whose lives are affected by Down syndrome. In one narrative, set in the mid 1940s, Margaret gives birth to Carolyn, and her doctor convinces her to send Carolyn to an institution immediately. In the other, set in the early 2000′s, Marie finds out that at age 39 she is unexpectedly pregnant (with a husband and two tween daughters), and that her baby has Down syndrome.
I am fairly confident that I would have loved this book even if I didn’t have a child of my own with Down syndrome, because it’s not really about Down syndrome. It’s about family and suffering and compassion and culture and love and why we make the choices we make.
Thankfully, Theresa Shea agreed to an interview with me, which I will print here today and tomorrow. Meanwhile, I hope you will purchase or download your own copy of The Unfinished Child today.
How did you come up with the title The Unfinished Child? 
Originally, I had another working title for the book, but one day I came across an article in a medical journal that explained doctors used to call babies born with Down syndrome “unfinished children” because it was believed that their bodies hadn’t fully developed in the womb. Right away I thought — there’s my title.
For me, the title resonates on so many levels. The unfinished child can refer to the baby with Down syndrome or the baby that is terminated. On a more abstract level, it refers to everybody, for I often wonder if any of us are every really “finished.” Aren’t we all a work in progress?

when the perfect baby you adore suddenly becomes a stranger

from the Daily Mail:

You would think it’s something that you — not to mention the midwives — would notice immediately. But it was two months before I was given the news that changed everything.

I was feeding my baby Xavier on New Year’s Eve in 2008 when the consultant rang. Terror pulsed through my veins as he told me: ‘Your son has Down syndrome.’

I’m not proud of my reaction that day, but I felt utter devastation. I panicked it would render him — and me — an outcast.

Less than a year before, I’d been a carefree party girl with a career as a novelist and living in London. Then came a very sobering unplanned pregnancy, discovered only days after splitting up with my boyfriend-of-sorts. And now another unexpected, far more terrifying mountain lay ahead of me.

Four-and-a-half years on, I can honestly say my initial fears were unwarranted. In fact, I think Xavier’s diagnosis made me confront my sudden motherhood head on.

I’m not saying I wouldn’t have been a good mother without it, but I was certainly jolted into action. It was as if I’d been given an electric shock that sent me headlong into parenthood in a way I’d never imagined.