Nolan started therapy at one month of age. He was initially diagnosed with a chromosomal anomaly, then after searching for answers for a long time, his grandmother asked his doctors at Seattle Children’s Hospital to look into a disease she had researched called Pelizaeus-Merzbacher disease (PMD) a rare, progressive, degenerative central nervous system disorder in which coordination, motor abilities, and intellectual function deteriorate over time. Seattle Children’s confirmed the diagnosis and also confirmed that Nolan’s older brother also had the same disease. These boys and their families are members of a small group of individuals who get together annually in Indiana for learning about how to live with this disease.
Nolan was very small at birth, around 4 pounds and born full term. He had very low muscle tone and very little strength to move. He slowly began gaining strength, began scooting on his back and rolling across the floor. He had a tube in his belly to feed for a long time, but can now eat foods with his fingers and drink from a straw. He now walks a couple hours a day with the use of a walker called a gait trainer that holds him vertical and supports some of his weight so he can move his legs to move around his house and community. When he is not in his walker or scooting around the floor, Nolan has a tiny little wheelchair that he is learning to push with his hands or can be pushed by a his family when they want to make faster progress.
The therapy Nolan and his family have received from the Elks has been instrumental in helping Nolan gain independence. Eating normal foods, moving where he wants to in his house and in the community and communicating his needs were all made possible in great part because of the early intervention services provided by the Elks major project. Nolan’s older brother, who is as charming as Nolan, did not receive services as early in life and is not able to stand, feed himself or roll. Nolan and his family are extremely grateful for the services they have received from the Elks Therapy Program. They have truly changed his life! Thank you, Tall Elks!