Moebius1.org |
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ALEX BARKER |
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QUESTIONS & ANSWERS |
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| 1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING
WRONG? (MEDICAL & SPIRITUAL ASPECTS) |
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| Well it's something that I've pondered from time to time.
I'm not that spiritual so I guess **** happens sometimes |
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| 2.) HOW MANY SYMPTOMS DO YOU HAVE & HOW SEVERE? | |
| I've got missing
fingers (6) in total, missing toes. No ability to smile and only limited eye movement. |
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| 3.) HOW LONG WAS YOU IN THE HOSPITAL AFTER BIRTH? | |
| I think I was only
in the hospital for a couple of weeks after my birth. |
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| 4.) DID YOU HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS? | |
| Want me to write a list? Erm.... ok many talipes transfers
which went pretty well because I can walk run and cycle. I've had a couple of operations to cure squints in my eyes too. |
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| 5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW? | |
| I've not got any experience of a G-tube. As for eating and
swallowing, yep I can do those two with ease. It's the not eating I'm not too good at. :( |
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| 6.) DID YOU NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS? | |
| I had physio at school to improve my muscle tone and I had
intensive speech therapy too. I now go to the gym twice a week and enjoy it (most of the time!) |
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| 7.) DO YOU EVER SMILE? | |
| Sort of. |
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| 8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME? | |
| Well my job doesn't pay enough, and the government take too
much in taxes. I've never thought about life insurance but I have travel insurance and I make a point of explaining what my condition is. Never had any problems as far as I recall! |
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| 9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT
MOEBIUS SYNDROME? (DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME) |
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| Log on to www.moebius-support.org.uk or you could try
contacting your local Children's Hospital |
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| 10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST? | |
| Well I'd rather not have the condition, that's for sure. But
I've been lucky. I've got loving parents and sister and some good friends who keep me from going off the rails! I think having Moebius has probably made me a better person |
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