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Doris Conkle witnesses a miracle every day.
|TJ is shown here with his niece, Paris. Photo by Rachel Mummey|
The miracle is her 26-year-old son, Troy Amodio Jr., who was not supposed to live past age 12.
Troy, who goes by the nickname TJ, was born with an extremely rare medical condition and today suffers from additional medical issues that require a great deal of treatments, equipment and trips to doctor’s offices. Medicaid pays the bulk of the expenses and has been key for the family in several ways. TJ also receives SSI.
TJ cannot walk and has trouble talking, but his smile lights up a room. He is able to work on a computer with special equipment, he has his favorite hard-rock music that he listens to with his stepfather, and he is surrounded by family and friends that love him.
Doris and her family need some additional help from the state, but today they are scrapping by financially while also being thankful for everything they have.
TJ was found with a rare medical problem shortly after he was born in 1982.
“They found a four-month-old fetus inside of my son’s brain,” Doris said. “He is the only documented living case (of this) in the world.” Of the 30 other documented cases, none of the people lived past age 12, Doris said.
The fetus of TJ’s unborn twin was actually inside TJ’s head, and the doctors had to remove it quickly.
“We had to call doctors in from the Vatican,” Doris said. “My son had six more days to survive before his twin would rupture his brain.” The initial surgery lasted 16 hours, and TJ has had a total of 59 surgeries throughout his life.
“(The doctor) told me he would not live past 12. I told him, ‘You’re not his mom,’” Conkle said. TJ also suffers from cerebral palsy.
“He’s doing great,” Doris said about how her son is doing today. “He’s on a partial life support system at home.” He is happy at home where he can be with family and friends, and he can travel at times, too. One of TJ’s favorite pastimes is riding in the sidecar of a motorcycle. He can’t wear ordinary goggles for the motorcycle because they do not ventilate correctly for him, so he wears ski goggles while out taking a ride.
“He cruises all day, and comes back looking like a little raccoon,” Doris said.
TJ attended both the Nelsonville-York City School District and the Athens County Board of Developmental Disabilities’ Beacon School, graduating from both in 2004. Today, his physical disabilities keep him at home much of the time, and Doris said he misses the social aspects of being in school.
Medicaid pays for most of TJ’s medical expenses, and Doris is very thankful for it, although she does not agree with some parts of the program.
“I’d be in the poorhouse if we didn’t have it. We get bills for like $351,000,” Doris said. The family regularly uses $4,700 each month in supplies and services for TJ. The family can sometimes receive vouchers to help pay the expenses of traveling back and forth to doctor’s appointments in Columbus and in other areas, but there are also plenty of times when the family has to pay all of these expenses.
Doris would like to see Medicaid pay for more of the supplies that are needed in TJ’s daily care, as well as for an air mattress that would be a big benefit for him. Even if she could get Medicaid to pay the $95 cost of fixing an air mattress that she has, it would be great for TJ, Doris said. She does not understand why Medicaid will not pay for some essential supplies that TJ needs, and said that the expenses definitely add up.
“I have a very, very rough time making it,” Doris said.
The family receives a Medicaid waiver that allows Doris, who is a nurse, and TJ’s stepfather, Curtis Gilden, who is also a nurse, to do much of their work for their employers while providing care for Troy.
“It’s awesome,” she said about the program. “Before, I was going out in the field taking care of people and I was having other people in here when I really needed to be with my son.” She works 40 hours a week caring for her son, and also works in nursing outside of the home for 14 hours each week. Curtis works in the home 40 hours a week, and they also both do plenty of work for TJ at home when they are not on the clock.
Another nurse also comes in once a day to provide extra care for TJ, who has several medical needs.
One program that Doris would like to see added to TJ’s care would be respite nursing that would allow Curtis and Doris to spend a little time together away from home.
“One of us has to be here at all times. We don’t get to go out to dinner. We don’t get to go catch a movie,” Doris said. Respite care is available for many families, but TJ already uses too many hours of medical care each week so that the respite care is currently not available for him, Doris explained.
Curtis said that it has been seven years since he and Doris had been able to go out for the evening together.
Doris would also like to see assistance for families that need to buy vans to transport family members with special needs.
“I went through every agency I could think of and every program I could think of to get him a handicapped accessible van, but I ended up buying it myself,” Doris said.
Doris and her family live in Athens County near Burr Oak Lake and the village of Glouster. Six people live in the four-bedroom house, which they moved into late in 2008. Previously, they lived in a three-bedroom mobile home in the Athens County village of Hollister.
Her daughter and two children live with Doris, Curtis and TJ, and Doris said she likes having a large family in the house. Her daughter, who helps often with TJ, is going to Hocking College where she is studying law enforcement.
The house is nice and Doris plans on having the family stay there for a long time. It needs some improvements for TJ, though, and she can’t afford to pay for them on her own. For example, TJ needs to have a special bathroom so he can get in and out of the room in his chair, and so that he could take a bath or a shower. Currently, he can only take sponge baths, and Doris said it has been more than three years since he took a real shower or bath, which he enjoys.
It’s tough for Doris to make it through each month financially and she doesn’t see any way that things will get better in the future. She doesn’t know how she will be able to make improvements for TJ, but she hopes to receive a little extra help from the state at some point.
At the same time, though, she and the rest of her family are also very happy with the assistance they receive through Medicaid and SSI, and are thankful for all of the people who have helped provide care for TJ over the years.
And most importantly, they are thankful for TJ, the miracle they live with every day.