By Laura Camper
The Easterwood Family, Tyler, 14, Katie and Kelly, 11, Lawrence and Rebecca, will be traveling to Disney World on Feb. 20 for an all-expenses paid vacation with Bert and Stacey Weiss, founders of Bert’s Big Adventure. Katie has been diagnosed with moyamoya syndrome and her twin sister Kelly has cystic fibrosis as well as diabetes. The news from doctors was almost more than Rebecca Easterwood could take.
Her daughter, Kelly, she was told last year, had diabetes.
“I thought my world was falling apart,” Easterwood said.
Kelly, who is now 11, was already afflicted with cystic fibrosis – she was diagnosed with that disease when she was 3 months old. Fifteen months later, Kelly’s twin sister, Katie, suffered a stroke and was diagnosed with moyamoya syndrome, a progressive disease that affects the blood vessels of the brain.
The family has been preoccupied with the illnesses, dealing with a brain surgery and semi-annual angiograms for Katie, breathing treatments, feeding tubes, and nine medicines a day for Kelly.
“We just take it one day at a time,” Easterwood said. “I’ve read and learned about it so much.” She and her husband Lawrence have both become well informed. They found out that moyamoya, which means puff of smoke in Japanese, runs in his family ??” he has two cousins with the disorder.
Brain surgery to reroute the blood flow to the brain corrected some of the damage Katie’s disorder caused. Easterwood talks about how cystic fibrosis and diabetes affected her daughter’s body ??” diabetes made it difficult to maintain a healthy weight and cystic fibrosis creates thick mucus in the lungs making even a simple cold a major illness. And Easterwood has become an expert in administering medications. “I do that everyday, all day,” she said.
Through it all the Easterwoods, who also have a 14-year-old son named Tyler, have tried to make life as normal as possible for their three children. The kids attend the Temple Elementary and Temple Middle schools and Tyler and Katie have been able to maintain As and Bs. But it’s been difficult for Tyler to understand.
“He’s perfectly healthy,” Easterwood said of her son. “He couldn’t understand why the girls were getting so much attention. … But now he’s old enough to understand that this has got to be done because they’re sick.”
He even pitches in to help with the girls when his mother needs help.
“And like any brother and sister, they do fight,” she said with a laugh. “They argue a lot.”
They have gotten help from family. And since they were diagnosed the girls have been getting Medicaid to pay for their treatments.
“I don’t see how anyone could afford the medications she gets,” Rebecca Easterwood said.
Jimmy and Kim Harris from Carrollton can relate. The family is slowly digging their way out from under a mountain of hospital and doctor bills.
“We’re getting there,” Kim Harris said. “That’s why we’re both working.”
The couple staggers their working hours so that one of them is always home with the kids. It helps them avoid expensive babysitters.
The Harrises found out they were expecting a fourth child just nine months after the birth of their triplets.
The triplets were born 13 weeks early and, ranging from only 2 pounds 3 ounces and 2 pounds 15 ounces, spent weeks in the hospital after birth. Kim Harris was put on bed rest after she found out she was pregnant and couldn’t go back to work. Luckily, Austin was a normal birth.
“Austin, he was nine pounds when he was born,” Harris said. “He looked perfectly healthy, huge like a sumo baby.”
But problems started when he turned 2, from viruses to pneumonia to viral synnovitis, and he was in and out of the hospital. In 2004, the doctors diagnosed him with level three acute lymphotic leukemia that had spread to the fluid around the brain through his spinal fluid. He arrived at Scottish Rite Hospital in Atlanta via Life Flight the same day.
“The longest period of time we stayed home was like two weeks at a time … and then we’d be right back in the hospital,” she said. “(The doctor) said we won the prize for the most admissions and hospitals stays.”
Austin underwent chemotherapy and when he turned 3 had 12 days of radiation treatments.
“He was the only child there,” Kim Harris said. “Of course that caused a scene.” At the same time the family was dealing with Austin’s cancer, Jimmy’s mother was diagnosed with cancer. She died in August 2004, a blow to the entire family, but it was especially hard for the triplets – Britney, Justin and Calli – to deal with. At that point, they started to understand how ill Austin was.
“After a little while, the kids kind of figured out, ‘well, Granny had cancer and she died,’ ” Kim Harris said. “One by one, they came up to us and would start crying, ‘how do we know Austin’s not going to die?’ ”
Austin endured the cancer treatments for three and a half years and then in July 2007 he received his last chemo treatment and is now in remission, she said.
“He has to go every two months right now, getting his blood drawn to make sure it hasn’t come back,” Harris said. “So far, everything looks fine.”
Harris said the family has received a tremendous amount of support from family and friends. Their church family at First Christian Church has literally been a godsend, she said.
“They actually did like that, not extreme makeover, but kind of like a makeover for the safety of the house for Austin,” Harris said. “We had that old shag carpet and stuff and they were concerned with Austin being sick that he would have issues getting sick with that. So while we were in the hospital they came in and put like the hardwood laminate floors throughout the house, painted the inside, pressure-washed the outside, cut the grass and stuff like that. … They wanted to do anything they could to help us.”
Still, all the bills, the treatments, the stress has taken its toll on both families. The Harrises and Easterwoods have focused so long on the illnesses of their children, they haven’t been able to spend much time just enjoying each other.
This year, they and 10 other children and their families will go to Walt Disney World in Orlando, courtesy of Bert’s Big Adventure, a non-profit organization based in Atlanta that sends chronically and terminally ill children ages 5 to 12, and their families, on the vacation that many families dream about.
The kids and their families will fly to Orlando for an all-expenses paid weekend with Bert and Stacey Weiss, the founders of Bert’s Big Adventure, and members of the radio program “The Bert Show,” which Bert Weiss heads. A medical team will also accompany the families to take care of the needs of the children.
“There are so many things that we take for granted when it comes to health,” Weiss said in a press release. “Not only are these children challenged on a daily basis, but so are their families ??” physically, emotionally and financially.”
The organization was founded in 2002 and has provided the vacation program to 50 Atlanta area children and their families.
“It’s like a dream come true for us,” Rebecca Easterwood said.
The family has never been to Walt Disney World but has dreamed of the opportunity, she said.
The Harris family has been once before and the older kids say it is their favorite place in the world, Kim Harris said.
“Both of us have to work, so we don’t get to spend time together as a family at all,” she said. “They said, what would we get most out of this trip and it’s family time. … It’s a rebonding thing.”