GREENVILLE — Anthony Joyner, 8, will eventually need a heart and lung transplant. In the meantime, his mother, Ashley Woods of Greenville, is working hard to get some money gathered so they can travel to California to get the ball rolling.
Already having gone through three open-heart surgeries the first year of his life, her son is scheduled for life-saving surgery March 9 in California.
The next surgery is expected to relieve the stress on the right side of his heart that he has.
“The d0ct0r said it’s putting a strain on the right side of his heart and he could go into congestive heart failure,” Woods said. “We don’t want him to get sick in the meantime. It’s an adventure.”
After complications from his last surgery, Woods’ maternal instinct kicked in and she took it upon herself to look for a heart/lung surgeon and found Dr. Frank Hanley at Stanford Children’s Medical Center in California.
“He agreed to do the surgery,” she said. “He was a pioneer in fixing what Anthony has. I did my research. I went on the website. He’s world-renown. Any parent would want the best for their kids. I’ll do this if it helps me save my baby’s life.”
Anthony was born in Florida on April 29, 2007, at a women’s hospital when the family lived there. Soon after his birth, his lips were blue and the doctor informed her the newborn would need open-heart surgery. Two days after he was born, they took off his umbilical cord and stuck wires in there and put him on a life-saving medicine. The very day he was born, the doctor sat down with her and told her he had some bad news.
What a shock, since doctor visits during the pregnancy did not indicate there were any problems with the child Woods was carrying.
Her son has been diagnosed with Tetralogy of Fallot (TOF) as well as Pulmonary Antresia and MAPCAS (Major Aorto-Pulmonary Collateral Arteries).
“This makes Anthony’s condition terminal,” she said.
One website said TOF is a complex condition that is a combination of several congenital (present at birth) heart defects. TOF occurs when the fetal heart develops abnormally during the first eight weeks of pregnancy. “Tetralogy” refers to the fact that four heart problems occur together to cause this rare condition. TET decreases oxygen in the bloodstream, often causing babies to appear blue or become fussy or lethargic.
“When he was born he had no valve,” Woods said.
He underwent three open-heart surgeries the first year. the first time at 4 months of age. then again at 7 months and the last one at 9 months.
“Ninety percent of his life has been spent in the hospital,” Woods said. “We had him home only 26 days when he had the first open heart surgery.
The last surgery took place in January 2015 when he went to Children’s Hospital in Cincinnati to replace a valve. What was supposed to be a couple of week visit turned into a three-month visit hospital stay.
“In the cardiac ICU, his shoulders reared back and his eye went sideways,” Woods recalled. “They said they didn’t think it was a stroke, but it was confirmed the next day after an MRI that he did suffer a stroke. He has had multiple seizures and had an EEG monitor on him for a week and a half. After he was stable and off life support, he was taken to in-patient rehab for 2 1/2 months. He underwent physical, speech and occupational therapy.”
Before that surgery, Anthony had already started knowing the basics. He was potty-trained and could write his name, but the stroke affected all of that. After he returned home, he was able to walk and talk again but had to go through out-patient therapy.
“Ninety percent of his life has been spent in the hospital,” Woods said.
Doctors from last year’s surgery, she said, found an aneurysm on his heart attached to his chest bone.
“Before they closed the hole, they tried dissecting the aneurysm to get a tip of it,” she said. ” A clot got through the small hole in the right upper atrium of his heart and it caused the stroke. Five days later, the valve the surgeon put in blew and Anthony’s heart started leaking.”
The stroke, she said, affected his speech, movement and cognitive learning.
“By the time he left the hospital he was able to walk and talk but it took a tremendous amount of therapy to help him recover to this point,” she said. “As he grows, more surgeries will be needed.”
Today, Anthony can’t keep up with his younger brothers, Caleb, 6, and a first-grader at Woodland Heights primary, and Dakota, 4.
Anthony is a third-grader at East School. He’s delayed but mainstreamed into some classes, she said.
“He’s slowly progressing with his motor and cognitive skills, but he’s not there yet,” she said.
Anthony is now on nine different medications; and was on 14.
Woods is hoping to raise $5,000 at least for transportation and lodging they will need while out in California. But, she pointed out, she doesn’t know what she will need or how long they will need to stay in California.
On top of everything else, Woods’ vehicle was damaged so much that she no longer has a car to drive locally and she’s unable to work.
“It will cost $500 for a round-trip ticket for one person, said Woods, who is planning to make the trip, leaving here March 7, with her mother and stepfather, Angela Woods and Bradley Denniston, and Anthony’s father, Joshua Joyner. “Out there, we want to focus on Anthony.”
An account has been set up at Fifth Third Bank and donations can go to Benefit of Anthony Joyner or go to gofundme.com. under ashley joyner.
“I am so grateful to those who donate,” Woods said. “I am forever in their debt. There are people out there who care.”
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