TJ is a vital part of our family. He has been an inspiration to our entire community. His friends at school learn from him what true friendship and unconditional love really is. TJ generates strength and courage in all those who come in contact with him. He lives every moment of his life to the fullest and his love is reflected in everyone he knows. He gives purpose to the rest of our lives, to help and care for those around us and never take for granted the gifts we have received by being part of TJ’s life.
Favorite Hobbies:
TJ loves Batman and the Teenage Mutant Ninja Turtles. He enjoys watching musical videos and hanging out with friends and family. He has always been a fan of bowling. He loves being with his best friend and brother, Anthony, and sister, Sarah, who are his biggest fans.
Proudest Accomplishment:
TJ has graduated from middle school. He has also competed in the Special Olympics.
MPS Heroes:
TJ’s heroes are the late Danny Gniazdowski and the Hickman brothers for all the courage and love they have shown. And also the supporters and scientists working on cures to help all people affected with MPS.
Words of Wisdom:
“When we come together in friendship and brotherhood, great things can happen,” the motto of the 5K in honor of TJ, and what you see exemplified in The MPS Society.
Personal Diagnosis Experience:
TJ had “typical” development as a small child. He started walking, talking, and was potty trained actually ahead of schedule, but it didn’t last long. Around age 3 he peaked and leveled off in his development. We started noticing his loss of the potty training and verbal skills. He still learned new words but was losing old ones at the same time.
Around age 5 our new family doctor set TJ up for a full genetics work-up. The testing at that time did not reveal his MPS. Specialists diagnosed TJ with PDD or autism. At one time it was thought that he had Landau Kleffner Syndrome. This is a disorder that presents childhood aphasia, or partial or total loss of the ability to articulate ideas or comprehend spoken or written language, resulting from damage to the brain caused by injury or disease.
Until age 12 TJ was treated as autistic but we knew that was not correct. Again, at 12, a new metabolic work-up was done, but MPS was still not identified. More blood was drawn than was needed and a random sampling of TJ’s blood was part of a genetics test done at the Cleveland Clinic testing for MPS disorders. At this time, he was identified as an MPS patient, and we were, for the first time, introduced to the disorder. We had never heard of MPS, but as it was explained to us by the doctors and other MPS parents, it made complete sense to us that this diagnosis was correct.
At this time, we contacted the MPS Society. As we learned about our son, we were faced with a decision: sit back and let it control our lives or become proactive to try to help TJ and others with MPS. We chose the latter. As we have moved forward, the goal is to stay positive. We have met so many amazing families through the Society. The support of others in your shoes is very comforting. Through the difficulties of dealing with MPS, we have learned to embrace and cherish every moment, not only with TJ, but also with friends and family. Our MPS children are a gift from God, teaching us more than we will ever teach them.
