Todd Daniels and Metachromatic Leukodystrophy

Todd's Story by Bobbie Daniels

Todd was born Feb. 2, 1998 in Jacksonville, FL. He was a perfect, healthy boy. The family moved to Virginia Beach/Norfolk, Virginia in Dec 1999. During this time Todd was diagnosed with Dysarthria. Which is an oral motor delay. He did not talk till he was about 3. After receiving speech services from the school system, they said he was developmentally delayed. In July 2002. We transferred to KingsBay, GA. When I signed up Todd for Pre-K. They did all his testing and evaluations for a new IEP. That is when the physical therapist and occupational therapist noticed he did not like using his left side. Todd also walked a little funny because he has flat feet. So Todd's pediatrician sent him to an Orthopedic Doctor to get checked out. That doctor said he was fine bone wise and if he had to diagnose him it would be with Cerebral Palsy. Well this was in Nov. of 2002. He referred him to an Neurologist. We could not get an appt. till Feb. 2003. During this time Todd started wetting the bed, having accidents during the day and was falling a lot. The pediatrician called them and said hey, we really need him to get seen. Well they could not get him in earlier so they scheduled him for an MRI before the appt. So, they did a brain and spine MRI before his appt. When we saw the Neurologist he had the results from the MRI. He said that the brain MRI came back positive and he would have to get with a few more doctors. Within a week we had an appt for Genetics to run test. On April 1, 2003 he was diagnosed with MLD. What a nightmare. He loves baseball and any other sport also. He would not go anywhere without his glove. He got to play T-ball in the spring. By the end of the school year in May he really could not walk long distances. Dreams Come True in Jacksonville, FL sent him on a dream to Walt Disney in July 2003. By the time school started in August 2003 Todd was in the wheelchair full time. On November 7, 2003 Todd had a G-Tube placed for feeding. He can still eat soft things, but not enough to keep him nourished.