News 12 at 6 o'clock / Tuesday, May 28, 2013
AUGUSTA, Ga. (WRDW) -- Twenty-four hours and their world changed. A happy, healthy little boy began losing function in his arms, and it wasn't stopping there.
The disease came on quickly, but a quick reaction saved his life.
It's called acute disseminated encephalomyelitis. It's an extremely rare disease where your immune system begins to attack your central nervous system. It can be caused by many different things, but for 3-year-old Alexander Saunders, doctors say it was most likely the flu shot.
It all started on Halloween in 2012, a day the Saunders say was not different than the ones before.
"We were trick-or-treating, pulling him around in the wagon, everything was fine," said his father, Thomas Saunders.
They went to sleep, and the next morning, Alexander's mom, Ashley Saunders, went to wake him up.
"I'm like, OK buddy, let's get up and get our clothes on, and he rolled over fine and he couldn't stand up," she said. "My initial reaction was, 'Man, he's sleepy,' so I just kinda picked him up we went on, he was fine."
So she took Alexander on to daycare and she went to work. When she got off work that day around 4:30, she went back to pick him up.
"When I walked in the daycare, they said, 'Um, he's not feeling good today,'" Ashley said. "So I went to the classroom and the teacher said, 'I've had to help him up all day. He won't won't stand up by himself.'"
Thomas was in Atlanta for work and spoke with Ashley and Alexander on Facetime later that night.
"I could see he was sitting on the couch and he was holding his little milk cup and he couldn't pick his arms up and he was having lean back and he couldn't make it work," he said. "That's when I knew something was probably wrong with him."
The next morning, Thomas drove back from Atlanta and they took Alexander to the pediatrician's office.
"They looked at him and did the look in his ear, look in his mouth and didn't see anything obviously the problem and that's when they said neurologist, and I was thinking, 'Oh Lord, that doesn't sound good,'" Thomas said.
So they took him to Children's Hospital of Georgia, where he was admitted immediately.
"It was a whirlwind," Ashley said. "We had so many doctors, we had nerve conduction tests, MRIs, spinal tap and everything."
The next day they had an MRI and halfway through the doctor came out to show them what she was seeing.
"She drew a picture of a brain and the spinal cord and she said we see lesions here and here on his brain and on his spinal cord," Thomas said. "She was so thorough with evaluating the options that we just we owe her that kid's life. If it hadn't been for her, he wouldn't be with us today, and I know that."
The Saunders spent nine days in the hospital receiving treatment. Alexander received IVIG to stop it from progressing to his legs or even to his breathing.
"He went from being fine on Wednesday night to not even being able to hold his head up and move his arms on Friday afternoon," Thomas said. "It was just scary. No other word to describe it."
There is no medication for the disease. His parents say now he just has to heal himself.
"Reality is he has to get better on his own and he's doing that and I tell him every day how proud of him I am and I want him to know that," Thomas said.
Alexander does therapy at the hospital twice a week and water therapy at the YMCA once a week.
"The hardest thing for me for it is he lost his protective mechanisms," Ashley said. "Like when he falls, he can't catch himself, so he would hit hard. He didn't have that reflex to put out his hands to catch himself."
Doctors told the family Alexander can improve up to one year so he has five more months to go, but the chance of recovery is not 100 percent. His parents say the progress Alexander has already made is huge and he continues to get better every day.
"Watching him progress and he's come so far. We wish he was better yesterday, but he's close," Thomas said.
"It's just amazing," Ashley said. "When they say children are resilient, it's true."
The disease is extremely rare. In all her time at the hospital, Alexander's doctor had never seen it. Alexander was able to be a case study and help students learn about the disease.
You can meet Alexander and many other Miracle Children during our Children's Miracle Network Celebration broadcast on Saturday from 8 to 10 p.m. on My12 and Sunday from noon to 6 p.m. on News 12.