Moebius1.org
FAMILY ALBUMS

Kristee & Vic

EMAIL
.
.

QUESTIONS & ANSWERS
1.) WHY DID THIS HAPPEN TO ME......DID I DO SOMETHING WRONG?
(MEDICAL & SPIRITUAL ASPECTS)
I got what I prayed for! during 3 1/2 years of infertility, my only prayer was "god, if you see me fit as a mother, I will not care if they have one eye in the middle of their forhead."

Victoria was a twin. We lost that fetus at 8 weeks gestation.
At 11 months of old, Victoria was diagnosed with Moebius,by a pediatric opthamologist. When I asked "what do I do and how do I find out more?" his response was "I don't know - it's very rare and I don't know any more about it."

I knew right then that Victoria and I were going to become well educated and teach others that it is OK to be born different.
2.) HOW MANY SYMPTOMS DOES YOUR CHILD HAVE & HOW SEVERE?
Victoria's symptoms are no fingers and only 6 toes at birth. The one toe on her right foot was removed at 15 months and she now wears a prosthesis. (she is in her 6th one). She has a beautiful smile and facial paralysis that begins at her temples and meets at her upper lip. she cannot make silly faces or scrunch up her nose.
3.) HOW LONG WAS YOUR CHILD IN THE HOSPITAL AFTER BIRTH?
Victoria was 13 days late and was delivered C-section. She came home with me three days after delivering.
4.) DID YOUR CHILD HAVE ANY SURGERIES RELATED TO MOEBIUS SYNDROME & WHAT WERE THE RESULTS?
We have successfully completed 11 surgeries. Strabismus in both eyes, hernis, 6 finger surgeries, and one to remove the toe and one to stop the growth of the stump extremity. My goal was to have all surgeries finished by the start fo kindergarten. We finished in Jan. of that year. I could not be happier with all of the procedures and their results.
5.) HOW DOES A G-TUBE WORK......ARE THERE ANY PROBLEMS.....WILL MY CHILD EVER EAT REGULAR FOOD AND SWALLOW?
Victoria has been fed by mouth with: attempted breast feeding (my nipples did not cooperate), regular bottles, and then regular spoon and fork. Never any difficulties with her suck and swallow.
6.) DOES YOUR CHILD NEED SPEECH OR PHYSICAL THERAPY.....IF SO, WHAT WERE THE RESULTS?
We were followed by an Early Intervention Team beginning at 10 months and then dismisssed at age 2. OT remained until age 3.
7.) DOES YOUR CHILD EVER SMILE?
Victoria smiles constantly.
8.) CAN YOU TELL ME SOMETHING ABOUT INSURANCE & FINANCIAL ASPECTS OF MOEBIUS SYNDROME?
The only difficulty I have had with insurance has been when I tried to get a life insurance policy for her, I was denied by Gerber. They said that 'their' experts said that Moebius has a short life expectancy. I have since purchased a policy through my provider. I have been very fortunate - the Shriners have taken care of all of her orthepedic needs - free of charge.
9.) WHERE CAN I FIND OTHER PEOPLE TO TALK WITH ABOUT MOEBIUS SYNDROME?
(DOCTORS - PARENTS - KIDS & ADULTS WITH MOEBIUS SYNDROME)
Just ask!!! NORD has a listing, and each geographic area has a support group. Thank God for Sharon Deveney! The East Coast Group is lucky to have her. (sbdeveney@hotmail.com) We get to gether twice a year and she keeps us well informed about all medical updates and how everyone in the support group is doing. Dr. Michael Repka at The Wilmer Eye Institute / Johns-Hopkins Hospital is very knowledgable and successful with Moebius kids.
10.) IN GENERAL,....DESCRIBE THE IMPACT OF MOEBIUS SYNDROME ON YOUR FAMILY....WHAT ARE WE UP AGAINST?
Our family was blessed with this Moebius child. They had all been acustomed to 'normal'. Victoria has opened their eyes and hearts to uniquenesses and differences. Being her mother has brought nothing but joy and warmth - we see only accomplishments.