Ronnie was born on the 19th of January, 1990. He was immediately taken to Arnold Palmer Children’s Hospital and put into their new neo-natal hospital which had just opened the prior month.
He wasn’t supposed to make it through the night. He was born caesarean and had complications from birth due to a lack of oxygen. He spent approximately four months in the hospital, was home briefly, and then back into the hospital for another three months.
The neurologist that saw him knew what Ronnie had from another case of myotubular myopathy. They did a muscle biopsy to verify the condition. Three days later we were told they wanted to put on a trach and g-tube. That was the beginning of the uphill battle.
I worked for a power company at the time, and we designed a tray for the vent on his chair (there was none prior to that time). We took him to several events, places, but as time passed, it became harder to transport him.
Ronnie has a lot of problems with prolonged sitting, and his joints are very bad. He is having difficulties with his eyes because he cannot close them. They have to put special drops into the one out of what he sees, having lost the other eye.
He loves wrestling (pay-per-view TV), baseball, football, all the sports. He knows every game, who is playing when and where, and who won. Not just one team – ALL teams, every sport. He is a Gator fan (University of Florida – for those who don’t know)!
Ronnie graduated with honors from his high school. He as the only disabled one to ever graduate from his school. He is very intelligent, very smart, and he has the RN’s wrapped around his fingers!
Some of the RN’s have been with him for fifteen years. A couple of them have been with him almost since birth. The continuity of care has definitely had an impact on his well-being.
Back before they figured out DNA – we sent blood samples to Howard Hughes Medical Center of Berkely. We sent samples of Ronnie’s and his mom’s blood, because he is x link severe. That is the gene from his mother. We talked to several doctors and scientists about his disease and tried to learn as much as we could with the lack of information available.
Ronnie currently is being taken care of in a group home.
The bottom line is Ronnie is a great kid. He likes girls! He has a great disposition and outlook on life.
by Ronald Feuer