“I am so grateful I have Donnie and so thankful for the journey and its experiences. I would not have missed it for the world.”
Donnie Heaton, Trisomy 18, 9/10/1992 – 6/21/2015, St. Petersburg, FL
Article from the Tampa Bay Times:
Epilogue: The boy who had nothing and gave everything
Saturday, July 4, 2015 6:18pm
He never ate a Happy Meal or ran the bases or spoke a word. His mom says he spent half of his 22 years in the hospital. The most he ever weighed was 55 pounds.
But Donald Robert Heaton’s family and friends believe that everyone is born for a reason, and Donnie was a gift. They believe his reason was to teach lessons of love and strength.
“We used to pray for Donnie to be healed,” said his aunt, Miriam Wood. “But we realized God created him just the way he is because his life touched so many people.”
Donnie was born on Sept. 10, 1992, to Karen and Don Heaton who, for their first 18 years together, had never really entertained the thought of having children. It just never happened, until one year, it did. But from the day of Donnie’s birth, he had severe health problems.
“We had this doctor saying that he wasn’t going to live, and if he did it wouldn’t be more than a year,” said Donnie’s mother, Karen Heaton.
Donnie was diagnosed with Trisomy 18, a chromosomal disorder that disrupts the development of the fetus in such a devastating way that many Trisomy babies don’t survive pregnancy, and half of the full-term babies are stillborn. Of those babies who survive to birth, less than 10 percent reach their first birthday. But Donnie lived for 22 years, nine months and three weeks.
On June 1, Donnie graduated from the Nina Harris Exceptional Student Center. He was awarded the “Papi’s Perseverance Award,” an annual recognition of students who set an example through accomplishment, positive attitude and individuality. In her nomination of Donnie, his teacher, Christie Vaughan, wrote of his contagious laughter, smile and spirit.
“Here is a boy who cannot walk, talk, eat or drink; who has persevered through so many surgeries and hospitalizations,” Vaughan wrote. “He has a purpose on this earth, and that is to bring joy to all those who care for and love him.”
Donnie’s father died when Donnie was 11, leaving Karen to parent him alone, creating a strong bond between the two. A Tampa Bay Times story in 2013 detailed their relationship.
According to family friend Sarah Knight, Donnie became the man of the house, in his own way, giving love and comfort back to his mother, who battled cancer and a stroke over the last few years.
“After Karen’s stroke, she was lying on the floor with him on his pallet, and he rolled over and put his arms around her,” Knight said.
Though he didn’t speak, he let people know his feelings, which were usually upbeat. “We all questioned how much Donnie could understand,” Wood said. “But we knew when he was happy. He was always happy. He would smile and clap his hands with great feeling. If you could see him smile, you’d be ashamed of yourself for complaining about your life.”
Karen Heaton believes that, though his mind was that of a 6-year-old, Donnie’s faith in God was real, and together they attended Journey Church in St. Petersburg. Pastor Craig Brown said Donnie would respond vocally in church and raise his hands in the air.
“When I would raise my voice in church and he liked what was happening, Donnie would get excited and clap his hands and speak like he could,” Brown said. “Sometimes that was the only amen I got.”
Knight recalled the many people who loved Donnie and wanted to make him happy. On Donnie’s 18th birthday, a family friend rode his motorcycle over to the house to take him for a ride.
“He said, ‘You’re 18 now, and you don’t have to listen to your mama. I’m going to take you for a ride on my motorcycle,'” Knight said. “He set him up there and got behind him and Donnie was just squealing with glee. He was crazy happy.”
Two weeks after clapping for his friends at graduation, after receiving his award, 22-year-old Donnie, who loved school, happy songs, crinkly things, hugs, the movie Cars and most of all, his mother, fell ill and was hospitalized again. His mother tried not to worry too much. They’d been there before.
“I just knew he was going to come back from the hospital,” she said. “He had resiliency; he bounced back every time. But he didn’t come back this time.”
He died on Father’s Day. There were more than 200 people at his memorial, so many that the venue was changed from their small church to the Gateway Christian Center. “He touched every life there,” Knight said. “The special ones have a hidden holiness. Donnie was closer to Jesus than most of us.”
Karen Heaton believes her son is with his dad now. Wiping her tears, she said: “He was my life. He made me so happy. I loved being his mom. I thank God for my friends and relatives, but there’s no one to take Donnie’s place.”
Dear Soft Family,
Donnie (9/10/92-6/21/15) joined his dad in heaven on Father’s Day 2015. You can read about this in the August 2015 SOFT newsletter. Also, link to the news item below:
Wow, it’s hard to believe that Donnie is turning 21 on September 10, 2013. We have seen a lot of miracles over the past 21 years. Donnie has had a lot of medical issues. He has lived through several pneumonias, c diff and UTI’s. He bowels have stopped due to an ileus several times. His main heart valve is leaking. He has scoliosis, a horse kidney, g/j tubes and issues with his digestive system. He has had many life threatening illnesses that he has survived. Now we are having an open house to celebrate his 21st birthday.
The hardest part of Donnie turning 21 is that he has to age out of All Children’s Hospital and has to go with adult care doctors. All Children’s Hospital and all his pediatric doctors have been like family and the changes are scary but we will have to learn to navigate through it all.
This is also Donnie’s last year of school. I have not made plans other than to spend time with Donnie when the school year is finished. Because of his developmental delays there is not a program I have found suitable for him.
When Donnie was born the doctors told us that he would be legally blind, hard of hearing and to take him home…he would die in our arms. They told us he would be a vegetable if he lived. I am grateful they were wrong. Donnie has such a personality. He is well aware of his surroundings. He interacts and responds to others. He has his own sounds he uses for communication. He loves blondes and flirts with them. He loves to watch other children at play. He loves music and watches television. He complains when he does not enjoy the program I have selected. Donnie radiates with love when he smiles. Everyone who meets him enjoys his smiles and laughter.
I have been blessed with loving friends and family. My church has been a great support. I am so thankful for their prayers.
I love being Donnie’s mom. I enjoy being with him, taking care of him and loving him. My biggest concern is as I get older what will happen as I become frail and what if he lives longer than me? My husband passed away and there is not a friend or relative to take my place. Even through all the struggles, worries, sleepless nights due to medical issues, I am so grateful I have Donnie and so thankful for the journey and its experiences. I would not have missed it for the world.
I am so thankful for my soft family,
Karen and Donnie