The Unknown Road

It is hard as a parent to watch your children in any kind of pain, but to be a parent and know there is something wrong with your child but have everyone around you dismiss your thoughts well that is unbearable... I know because that is what happened to me. This is the story about our son Masan Robert Payne and the disease Charcot~ Marie Tooth that he was born with. To sum it up CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves.
Here is how this long road began....
I think the first sign was the fact that he threw up a lot when he was a baby. The told us it was acid reflux and put him on medicine for it but, the medicine didn't help. Then when he was first learning to walk he was always on his toes and often complained that his calves hurt. His doctor said it was no big deal and he would grow out of it by the time he was 2. Age 2 came and went still walked on his toes, again the doctor said nothing to worry about but, this time sent him to PT.
In September of 2006 Masan started preschool and his teachers noticed he was falling a lot in a 4 hour period not as if he had tripped over something but, one minute he was up and the next he would drop. They also noticed his hands shaking while he was writing or cutting, Mrs. Myers expressed to me she was concerned. Finally after telling the doctor about what the teachers had observed he stepped up to the plate and scheduled us for an appointment with the Orthopedic surgeon. Again I was told he was fine and PT should cure things. PT didn't do anything actually it just seemed to make him hurt more, and to top it all off the Physical Therapist suggested that Masan be checked for Cerebral Palsy. At this point I felt helpless, why wouldn't the doctors just listen to me? I am his mother and I know him better then ANYONE! So I asked for a second opinion.....They sent us to a Neurologist at Children's Mercy Hospital in Kansas City, MO. Upon examination the neurologist noticed Masan had no reflexes in lower extremities. He requested more test to be ran. They did an EMG and noticed something very strange, so they sent him for a blood test to see if he had a disease the doctor called CMT. In October of 2007 we finally got the answers we had waited four years to hear. It was confirmed Masan suffered from an inherited disease called Charcot-Marie-Tooth. We were so happy to finally get answers, but then the doctors told us that Masan is loosing the use of his muscles very quickly and they don't understand why, so yet again we are left with no answers. We have always lived life one day at time, but once we were given Masan's diagnosis we were forced to face our fears and look them straight in the eye.
There are many people that got us where we are now, but there is one special lady that believed in me as a mother and helped me open the doctor's eyes. She was the only one who trusted me when I felt in my heart that something just wasn't right. This lady I am speaking of is Susan Myers, Masan’s preschool teacher. Not only did she keep me informed of any changes in Masan while he was at school, she let me know it was okay to fight for my child.
Since being diagnosed Masan has been put in 3 sets of Afo's, and is currently going through OT and PT. Although it is very rare Masan's vision has been affected, he has had his prescription changed twice over the last two years. Currently he uses a wheelchair for distance purposes. Masan attends school half days (due to fatigue) at Pickett Elementary an all level school that has fit Masan's needs perfectly. This child that at one time wouldn't unclench his arms from around my neck, has really blossomed into an amazing little man.