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My name is Kaleb Andrew Griffin. I was born on November 3, 2005. I have been diagnosed with a rare genetic disorder called Moebius Syndrome.
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Hi Family and Friends,
My parents were not aware of what I had when I was in my mommy's tummy. They knew there was a problem when I would not suck a bottle.
Moebius Syndrome is a rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can't smile or frown, and they often can't blink or move their eyes from side to side. In some instances, the syndrome is also associated with physical problems in other parts of the body. Moebius Syndrome is extremely rare. Two important nerves - the sixth and seventh cranial nerves - are not fully developed, causing eye muscle and facial paralysis. The movements of the face - blinking, lateral eye movements, and facial expressions are controlled by these nerves. Many of the other 12 cranial nerves (
http://www.ciaccess.com/moebius/homepage.htm#nerves)may also be affected, including the 3rd, 5th, 8th, 9th, 11th and 12th.
Moebius Syndrome has affected me in a couple of different ways. I am not able to suck effective enough to use a regular bottle. I had to have surgery to place a feeding tube (G-Tube) in my tummy to ensure that I get nourishment. My mommy bought me a special nipple called the Haberman feeder. This nipple help me to get my food.With the assistance of my speech therapy and my loving mommy I am doing up to 3 bottles a day by myself (yeah).
My feet were also affected. I have club feet. I had to have serial casting that required me to have cast from my hip to my toes for 12 weeks (that was a tough time for my mommy). At the end of the 12 weeks, I had surgery to release my heel cords so that my feet will be flat on the floor. I have to wear special shoes that have a bar in the middle for the next couple of years. I wear them for 23 hours a day (although my mommy cheats) and when I start walking I will only have to wear them at night.
My left hand was also affected. My index finger did not develop completley and my last two fingers are webbed. My hand is smaller than my right hand. That's OK, I can put my entire hand in my mouth without any problems and it tastes like chicken mmmmmmmm!!!
The biggest problem is that I can't smile or squint my eyes when the sun is out. I love to laugh but it is hard not being able to share my smile with my mommy. She definately hears my smile though and we play all day.
I am currently doing speech therapy and I will start physical therapy in April to ensure that I am strong so I can start walking and running and destroying the house. The syndrome can affect upper body strength so I want to get a head start.
There is going to be a Moebius Syndrome Conference in July in California. I will have my first plane ride. My mommy's family at Bank of America is helping us to go so that I can see special doctors to help me to be all that I can be.....what a great family!!!
I will keep you all posted on my progression. My mommy won't let up so I have to work very hard to keep up with her. Thank you all so much for your thoughts and prayers, my family greatly appreciate it.
With All of My Love
Kaleb Andrew Griffin
