Javier and Miguel Bermeo are twins, both diagnosed with Myasthenia Gravis as infants. Javier, diagnosed at eighteen months with generalized myasthenia gravis, has had a thymectomy. Miguel was diagnosed at twenty-two months with ocular myasthenia gravis. Javier, Miguel and their parents inspire those of us who also live with this disease. The following is an update on the twins as told by their mother, Ashley Bermeo.

Both boys are doing very well academically. The only obstacle we face is that the local county school system, despite countless meetings, does not understand myasthenia gravis nor acknowledge this disease as impairment.

The boys are in their second season of soccer and though it tires them, they do well. The coach is very understanding and encourages them to do their best. If the boys show signs of fatigue or weakness, he lets them rest. The boys know how to swim well and last summer they learned how to body board. They ride their bikes and love the outdoors. We are looking forward to more of this activity this year.

Miguel and Javier's average day begins between 7 and 8 am. On a school day, we dress, have breakfast, and arrive at school by 9 am. On days they do not have school, they rest and regain their strength.

Their extracurricular activities include some sort of schoolwork, learning computer skills and games. They practice writing for about ten minutes. We also do crafts or perform a reading exercise. We have lunch and medicines around 12 pm. Weather permitting; we try to do small afternoon activity outside. If not, we play board games. Two o'clock is rest time. Javier naps

for 1-2 hours. Miguel naps for about an hour. After dinner and weather permitting, we go for a bike ride or a walk. Bedtime for the boys is 9 pm. Therefore, it is a busy day full of activities and excitement with Miguel and Javier.

Though they are very active, they have learned to listen to their bodies. When they need rest, they stop and let us know. We also try to monitor how many days they are steadily active. We have learned that we cannot do soccer on Saturday, a trip to the beach on Sunday and then expect them to have an active Monday. So everything is monitored. The boys live a normal life like all their friends, and no one knows any different.

Their friends know that the boys have myasthenia gravis. If Javier's ptosis is bad and he is tired, one of his friends or Miguel will sit and play quietly with him. Children are so much more loving and acceptable of differences. They are truly little angels.

William and Ashley, Miguel and Javier