Flagler County family seeks help.
At 1 year old, Tye’Sean Giddens isn’t aware that he has Wiskott-Aldrich Syndrome, a blood disease that affects just a few boys out of every 1 million born. He is, however, aware of trucks.
Every week as his mother drives him from their Flagler County home to a hospital in Orlando for platelet tranfusions, Tye’Sean sits in his car seat, points out the window at semis and says, “Big truck!”
“I’ll try to get them to honk the horn, and it excites him even more,” said his mother, Leandra Tarpley. She has accompanied him on these trips to Orlando every week, from November 2019 to March 2020. He has eczema on his legs and face, essentially no immune system, and he will undergo chemotherapy next month, in Gainesville. That should make the next step possible: a bone marrow transplant.
“He will hopefully continue with his personality,” Tarpley said, “but with the chemo, it’s going to drain him, and he’ll have to go through speech therapy and physical therapy.”
He’ll be in the hospital for 28 days to see if the bone marrow transplant is successful. If it’s not, the doctors will start over with another round of chemo, Tarpley said.
Tarpley and her two children live in Espanola with Tye’Sean’s father, Sean Giddens Jr. Both Tarpley and Giddens have lost their jobs either because of helping Tye’Sean or because of the pandemic, and now they’re faced with more financial hardship: Tarpley will need to live in Gainesville, near UF Health Shands Hospital, to be with Tye’Sean at least for the month of June. After that, Tye’Sean will need lots of attention, and Tarpley said she was told to expect not to work for up to a year.
To help the family, visit https://www.gofundme.com/f/helping-tyesean-ampamp-family.
Tye’Sean has been hospitalized for abscesses five times since November, in addition to the weekly trips for platelet transfusions, Tarpley said. She knew something had to change; Tye’Sean can’t get weekly transfusion for the rest of his life.
The family members were tested to see if their bone marrow could be a match.
Giddens remembers when Tarpley got the message from the doctor’s office. “She was so happy,” Giddens recalled. “She was yelling, ‘You’re a match!’ I said, ‘When are we going to get started?’”
Becoming a father to Tye’Sean has helped Giddens make a big change in his life, he said. Giddens has been arrested multiple times in the past, including once for his role in a home invasion in 2013, when he was 19, for which he served three years in prison. He violated probation on that charge as recently as 2019.
Tarpley, who is 25 years old now, said that after they got together a few years ago and she became pregnant, “Everything changed with him, period,” she said. “He got a job, and he never got a job before. He’s tried to provide for us, got us the house we’re in now. It was a big change. His grandma tells him all the time that she’s proud of him. She thinks that if Tye wasn’t here, he would still be doing what he was doing.”
Giddens agrees. “I’ve changed a lot,” he said. “Before, I had nothing to look forward to. Now, I have a son, a house. I’m focused. He’s got me on the right track. … This right here — there’s no turning back for me.”
Tarpley said she’s filed for unemployment, she already has WIC and SNAP benefits, and she’s been doing research to figure out how she can live in a hotel or an apartment, in Gainesville. On top of that, there are bills at home that are difficult to pay under any circumstances, and the pandemic has made it even harder to keep up.
When Tye’Sean is able to return home, he will need to be isolated in his own room, so they will need to find a larger home, as well.
“We’re living off of basically nothing right now,” Tarpley said. “We hate asking people for help over and over again, but in this time, asking for help is all we can do. … I’m scraping pennies.”