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Guest column | Jack Smith

For courage against Huntington's disease, my son deserves a Father's Day medal

My son Jeff deserves a medal. So, for a Father's Day gift to myself, I'm going to give him one.

Jeff will turn 39 years old on July 25 and has Huntington's disease. This incurable brain disorder is inherited from a biological parent. It was during the week of Sept. 11, 2001, that he was diagnosed. On Memorial Day 2001, he had a bad motorcycle accident, nearly lost his leg and still has back and leg pain from that accident. Currently, Huntington's prevents him from having good control of his speech, hands and legs. We are honored and privileged to have been put on this Earth to care for him for as long as we can, having adopted him as an infant from the Evangelical Child Welfare Agency in Chicago in 1972.

When asked about his future, Jeff says, "I'm just waiting to see what God has in store for me next." When he speaks, he hesitates, trying to form the words first in his head, then it takes a little more time to say the words, if he is able to say them.

He uses a walker to get around much of the time. His knees kind of buckle under him but he usually doesn't fall. If he does, we are right there to catch him. Huntington's is one of those diseases that create an appearance that the afflicted person might be under the influence of alcohol, but isn't.

He can still grip a fishing pole and he enjoys his magazines with pictures of yachts and fishing trips. He once dreamed of living on a boat. He is happy fishing in any body of water, whether he catches anything or not. We do most of his hygienic chores, his hands won't steady to use a tooth brush. In short, every day is a frustration for Jeff.

Yet, he never complains. Most days, he makes his way out to the patio where a stationary bike and a stair-stepper awaits. He uses those to strengthen his legs.

On Thursday evenings, he goes to Calvary Chapel Worship Center with his aunt. If I don't go with him, I'll ask him, "What did Preacher Strayer talk about?" He always answers the same way, "You missed it."

He still has a great sense of humor, I don't know how much of a sense of humor many of us would have under similar circumstances. He amazes me. Jeff loves his family and they all hold a special place in their hearts for him. His brother Jeremy recently took him to the last Iron Maiden concert tour date and they like spending time together. He really liked that concert and that was a very special outing.

Every day, Jeff rises to see what the new day will bring. He shows me courage, he lives courage. So, earlier this month, I went to the trophy shop in downtown New Port Richey to select a medal for him, which I will give him today on Father's Day.

Jack Smith lives in west Pasco. For information on Huntington's disease, visit the Huntington's Disease Society of America website at hdsa.org

For courage against Huntington's disease, my son deserves a Father's Day medal 06/18/11 [Last modified: Friday, June 17, 2011 11:02pm]

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