Monday, April 11, 2011

MOEBIUS SYNDROME IN THE NEWS
Today, it's our new hero, Abbi Forester, from Scotland:
"Abbi Forrester's parents know without doubt when she is happy - despite never having seen her smile. The four-year-old suffers from a rare illness that means she is unable to form any facial expressions, so strangers often think she is unhappy.   But her mother Linda knows differently by her daughter's laughter and giggles when she is playing.
The 37-year-old from Kirkcaldy said: "I found it hard when Abbi was younger. When you smile at a baby and they don't smile back it is harder to feel a bond.  "It's still difficult when we are in the supermarket and people come up and say, 'give me a smile', 'where is my smile?'
"But I know when she wants to smile, you can hear it in her voice, you can see that sparkle in her eye. And when she gives me a cuddle, you hear her giggle or she says I love you Mummy, it doesn't matter that she's not smiling at all."
Abbi is one of just 14 people in Scotland thought to be living with Moebius Syndrome, which paralyses all the nerves in her face.  Her mother was told by doctors there was a problem with Abbi at her 20-week pregnancy scan. Abbi had club feet, which pointed her legs inward, a known sign of Moebius Syndrome. When she was born at Forth Park Hospital, she was limp because of the damaged nerves in her face and upper body. 
Doctors gave her anti-fitting medication, believing she was having seizures because her eyes rolled around in her head.  In fact, the paralysed nerves in her eyelids meant she couldn't move them. Her rolling eyes were her way of blinking, and she slept with her eyes wide open.  At 12 days old Abbi was transferred to the Royal Hospital for Sick Children in Edinburgh, where she was diagnosed.
Her mother, who was taken to a side room with husband Greg to be told the news, said: "I was concerned that Abbi was going to be severely disabled or brain damaged. When I found out what it was, I was almost relieved. It could have been a lot worse."
The paralysis in Abbi's throat meant she had to be tube-fed for the first two years of her life. Moebius sometimes affects the skeleton and so she has one hand smaller than the other. She has low-set ears, an arched palate and a deformed tongue. But the most obvious symptom is her inability to frown or smile. She cannot close her mouth because her jaws aren't strong enough to pull together.  Her mother, a production operator for drinks firm Diageo, said: "As her mum I just know when she's smiling. It may not be on her face but she is smiling inside."  The Forresters have been helped to cope with Abbi's condition by the Moebius Research Trust, a charity that provides advice and information on the rare symptoms. The family say the trust has helped them to feel less isolated."

WORRIED ABOUT OVERSCHEDULING YOUR CHILD?
Well, for you moms and dads out there, just maybe...don't be.  Research suggests very, very few children out there are truly frazzled and tense from being too busy.  Rather, too many might not have enough to do:
"Nick Nunley spent his childhood years on the go. It started with hockey in first grade, and later expanded to other sports, including baseball, cross country, basketball and golf. Now a senior in high school in Illinois, Nunley focuses on hockey and golf, sometimes playing on two or three hockey teams in one season. He also heads the school's law club. Most weeks, Nunley said, he spends 15 or 20 hours participating in extracurricular activities.
In some circles, a schedule like Nunley's is a cause for concern: Could he be doing too much, overscheduling himself to the point of stress? Authors of books, such as "The Over-Scheduled Child: Avoiding the Hyper-Parenting Trap" (St. Martin's Griffin, 2001), have worried that parents and kids are becoming frazzled and anxious in the face of constant activities. The image of the overstructured child with no time to play is a common media refrain.
But Nunley and his mother Vanessa, who blogs at moreismoremom.wordpress.com, say they're happy with the schedule they set. Trips to practices and games were "some of the best moments of our family life," Vanessa Nunley told LiveScience. And for Nick, who is headed to DePauw University in Indiana next fall, it's the downtime that's no fun.
"My hockey career just ended and it's not quite golf season yet, so I'm a little bored not having things to do all the time," Nick Nunley told LiveScience. [Sidebar: Parent and Expert Tips for Juggling Busy Kids]
Despite fears of overscheduling, new research suggests that busy kids like Nick may not have much to worry about. While it's true that the benefits of involvement in activities decrease when kids are extremely busy, only a small number of children and teens take part in that many extracurricular activities. Far more kids take part in no structured activities outside of school at all, said Jennifer Fredricks, who presented research on overscheduling March 31 at a meeting of the Society for Research in Child Development (SRCD) in Montreal.
"I'm definitely more worried about that group," Fredricks said.
Nationwide, being busy is not an epidemic. In 2006, SRCD published a report finding that kids spent on average just five hours in structured activities (besides school) each week. Just 3 percent to 6 percent spend more than 20 hours a week in extracurricular activities.
"It's a community that has a voice," Amy Bohnert, a psychologist at Loyola University in Chicago, said of the small percentage of kids who do struggle with taking on too much. "[Overscheduling] is real for certain people, but it's not the reality of most people in this country."

"When you innovate, you've got to be prepared for everyone
telling you you're nuts." -Larry Ellison
 


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