After the appointment Mommy rushed over to see my Daddy and neither one of them were satisfied with the doctor that day.  Luckily, being in the military and in the medical field, my daddy was able to get us an appointment with a pediatric optometrist the next week. My appointment was the following week on May 15. 

By the time Mommy and Daddy met with the optometrist, my eyes had progressed. I was showing endotropia in my right eye and I had developed serve ptosis in both eyes. Dr. Mary O’Hara (Pediatric Optometrist Brook Army Medical Center San Antonio TX) thought it was a third nerve palsy, because my symptoms had developed so rapidly, Mommy was beside herself.  The doctors where telling her that I would probably have a tumor on my brain and this is the reason for my symptoms.  Instantly Mommy broke out in tears.

between rocking me from hunger pains was pray, (I was 18 months old at the time). Neither one of us slept, and my Daddy was trying to find out himself what was wrong with me. 

It was morning and at 5:30 a.m. the nurses came in to prepare me. Mommy and daddy were allowed to walk down with me. My daddy was the only one allowed in the room to put me asleep, and in the MRI unit. My daddy came out to the waiting room with Mommy and Uncle Dwayne.  The three of them paced the floor and prayed and waited.  It was two hours before they could see me and the procedure was over. We went back to my room and waited another six hours before we heard any results.

That following weekend, Dr. Suhrbier called Daddy at home and said Myasthenia Gravis. Daddy had heard of this disease.  The week of May 21, Daddy and Mommy and I met with Dr. Suhrbier in his office at Brook Army Medical Center.  He reviewed with Daddy and Mommy  the disease and went ahead with a procedure called the TENSILON Test which was positive for Myasthenia Gravis.  Now I was diagnosed and my life with MG began.

I had to go through a CT scan to check my thymus. If it was enlarged then that would be hopeful.  Remove it and maybe I would healed, the doctors said.  But, the CT scan found my thymus to be normal. By now I was 19 months old and treatment with Mestinon began. At first it was .6ml every four hours.  Through out the night Mommy and daddy where working in shifts to wake each other up and give me meds.  Also the doctor proceeded with patching my eye to try to strengthen the eye muscles but that just made it worse. Daddy and Mommy discontinued the procedure.

In July things where going good and I was just on mestinon. (In August of 2001 Daddy (William) was transferred to Fort Bragg, North Carolina) After the move Mommy notice that I was becoming weaker than my twin brother Miguel. I would get tired and take naps more frequently. We were schedule to see new doctors in September and knew the fatigue was part of MG. Daddy and Mommy had not expected Miguel to show signs of Myasthenia Gravis. But Sept. of 2001 when Miguel was 22 months old almost over night he started to develop the exotropia in his right eye and ptosis by the next day to where the eye was shut.

Daddy and Mommy began treating Miguel with mestinon and discussed other options for me. Miguel has just ocular Myasthenia but I was generalizing. I wasn't running as fast or keeping up with Miguel. There was a big difference in my strength and I was always tired. Daddy and Mommy worked with Dr. Sander's on adjusting the amount and times of medication until they found a dosage that I could handle and would work.  Miguel was fine as long as he took his meds.

Our family had many visits with Dr. Sander's.  In June of 2002 I had developed serious drooling problems and had a hard time eating. I would want to eat but it would take me so long to chew my food so I could swallow it, that I would get tired and just spit the food out.  I was now two years old and was out of the baby food stage.  Mommy tried pureeing my food, blending it into a shake, and at times even sat down and feed me by hand which become routine.

Daddy prayed every night hoping they made the right decision. The surgery was successful and I recovered quickly. The next day my eyes where perfect but that was short lived. Daddy and Mommy knew it would take at least two - four years to see if the decision they made for me was the right one.

Today Miguel and I are five years old. Miguel still has ocular with no signs of generalizing.  But, he has developed more ocular MG symptoms, double vision, and has started having ptosis on his left eye, especially when he is tired and sick. Since my thymectomy I have been growing and gaining my weight back.  But, I still have severe ptosis most of the time especially when I'm tired and it's hot.  On the up side it's not everyday. I have at least four good days a week where my eyes look great during the day, but by night they are tired. 

The biggest fight my parents have now is to get the school board in our county to listen about MG and beware of it when we start school next year. I think with all the support Miguel and I have been blessed with, it  will be fine. Thank you to everyone who has helped us and to our family and friends! This is our story and I hope you enjoyed it!

If your parents would like to talk to our parents they can e-mail William and Ashley Bermeo at JAMW4@aol.com .