Mike is 14 years old. He was born in 1983 and diagnosed with LMBBS in 1991.
Mike was born with a number of birth defects, the most complicated one his heart. He also
had enlarged kidneys, reversed organs, and some others. He had six toes on each foot and a
large port wine stain birthmark on his torso. He was a big baby, nine and a half pounds!
Mike was born at home under a doctors care and within hours was placed in a neonatal unit.
He was moved to another hospital with more experience in serious heart defects. Mike
stayed in the hospital his first 21 days and was followed closely with many tests and hospital
visits. They thought he would need heart surgery by the age of 2 but it was delayed until he
was six and a half years old.
School has been difficult for Mike. Teachers
noticed his vision problem. He had been wearing glasses since eighteen months for
strabismus. The eye doctor didn't think Mike had a vision problem, but felt it was a learning
disability. The change in his retina's was finally seen at the age of seven.
At this time, Mike needed to have a pacemaker implanted for his heart, making the vision
problems secondary. After he was stable, he saw a retinal specialist in New York City who
diagnosed the retinitis pigmentosa.
After reading everything about RP she
could find, Mike's mom, Linda, discovered LMBBS! She still marvels that with all the other
problems Mike has it was his toes that are the tell-tale characteristic!
After many doctor visits they have learned that Mike's multiple medical problems are not part
of the LMBBS.
Mike is now in High School, regular classes. He is an average student but works hard. He
uses a cane outside of the home. This is a big step toward independence for him! People
now move out of his way!
Shoes are hard to find for Mike. They do not come wide
enough. He ends up with plenty of toe room though. He lives in sneakers, EXPENSIVE
sneakers!
His weight has not been much of a problem until about 3 years
ago. His family tries to help him control his diet but it is hard. His muscle tone is poor and
always has been, just one more thing to work on.
Mike enjoys the camps for
blind kids and a few other annual events. Visit these sites for more information!
The National Federation of the Blind