Because he is a courageous fighter who never gives up; because he gives unconditional love; because he radiates joy at the simplest of pleasures; because he brings the brightest light to our lives.
Favorite Hobbies:
Early years: bike riding, going to the beach, baseball, football & basketball. Present: therapeutic horse-back riding, stationary bike & riding in the car.
Proudest Accomplishment:
Joey's proudest accomplishment is the fact that he made confirmation with his church school class. Joey was always intensely proud of all of his accomplishments, each time exclaiming "I Can Do It!" Whether it was mastering his two-wheel bike sans training wheels, taking his dog for a walk without letting go of the leash, learning his colors or hitting a baseball 10 out of 10 pitches, Joey was just full of high spirits!
MPS Heroes:
The entire staff at his special-needs school in Braintree, Massachusetts, Cardinal Cushing Day School (formerly St. Coletta's). Each and every person there treats Joey with respect, dignity, compassion and, I dare say, love. They fill his days with a wide variety of activities and encourage him to maintain his remaining strengths and skills.
Words of Wisdom:
Just when the caterpillar thought the world was over, it became a butterfly.
Personal Diagnosis Experience:
As Joey was not diagnosed until he was 11 years 9 months old, our diagnosis experience is a very long one. By the age of one, Joey was not learning "no" commands, much to the risk of his safety. By the age of two, his speech was becoming a concern. Having had three daughters before him, I was told that boys are "slower" than girls, but I knew. I knew before he was even born that something was different about this baby; he was so very restless, kicking me like I had never been kicked before.
When he was just one month old, he made a movement with his eyes. It was very fleeting, but it scared me to death, and my whole body was consumed with fear. I exclaimed to my friend who was there with me, "He is autistic, I saw it in his eyes!". Although she told me I was being paranoid, I knew and worried constantly, wondering what "it" was that was different about Joey.
He was extremely hyper and never learned to read or to write, although he could recite the entire alphabet and count to ten or twelve, maybe twenty. He learned to sing all of the childhood songs and his vocabulary grew to hundreds of words; he talked non-stop. He had numerous ear infections, three hernias, a tonsilectomy and tubes placed in both ears two times. He wore hearing aids and glasses. When he was 7, he was diagnosed with mild mental retardation and ADHD. When Joey was 9, we were told he was moderately retarded and by the time he was 11 we were told he was profoundly retarded.
Although doctors were puzzled, none put all of the pieces of the puzzle together. One said he had never seen a child like Joey; another actually told us to leave the emergency room of one of our nation's renowned pediatric hospitals, saying "There is no more we can do for this child," when we went there in a crisis situation. Another doctor told us that regular doctors always fell asleep when geneticists talked at conferences.
Joey was losing every skill he had ever learned—how to talk, how to feed himself, how to use the bathroom, even how to play. And no one could tell us why. We finally found an angel doctor, one who was not going to give up until she found an answer for us. She checked Joey into a hospital to run numerous tests and one of the tests she ordered was a skin biopsy. Within three months, we finally had the answer ... MPS IIIB. After nearly 12 years of trying to find out how to help our son, it was beyond devastating to learn there was no "fix". But with an answer came a sense of calm. At least we no longer were asking, "What is happening to our son?" We now knew ... as I had really known all along.
