Andrew Bishop has a lot in common with many other 12-year-olds: He goes to school five days per week, plays the trumpet in his school’s concert band, is a member of the National Junior Honor Society and likes playing video games and sports.
But Andrew and his mother, Melissa, 46, of Winter Garden, have a genetic disorder so rare that only one in a million people have it.
The disorder is called Barakat’s Syndrome, and it causes hearing and vision impairment, dental problems, hypoparathyroidism and kidney failure.
Moreover, Andrew suffered a stroke when he was younger, with brain damage causing severe epilepsy that prevents him from attending Lakeview Middle School full-time. Andrew must take some classes online, based on a processing disorder from his stroke, but Melissa is trying to get him back into French classes as soon as she can, because he enjoyed them a lot, she said.
“I take four classes on Monday, Tuesday and Friday, and two classes on Wednesday and Thursday,” Andrew said. “I like lots of sports, like basketball and swimming, and spending time with my pets — three cats and one dog.”
Andrew competed in a Special Olympics three-on-three basketball tournament last weekend, in which his team from Lakeview won once and lost once against a team from Gotha Middle School.
“The three-on-three was all defense,” Andrew said. “I had to defend (two players).”
Melissa has started a fundraising campaign and a donor search to defend her son’s life, as well as hers.
“The goal for us is to each get a kidney transplant,” Melissa said. “We’re trying to control his diet, his potassium and phosphorus levels, so he won’t have to do dialysis.”
This has led to strict regulations on Andrew’s diet. Among foods he cannot eat are cheese, cantaloupe, bananas, potatoes, whole grains and peanut-butter-and-jelly sandwiches, which were once his favorite, Melissa said.
If Andrew does not get a transplant by age 18, he will need to start dialysis like his mother, she said.
But Melissa has gotten them active on a transplant list at a hospital in Tampa, which she called one of the top kidney transplants in the country, if not the world.
“Getting on a transplant list is an endeavor,” Melissa said. “Typically, the doctors and nurses don’t tell you everything up front, because they don’t want to overwhelm anyone. They tell you as you go along.”
The hospital in Tampa did not tell the Bishops that they would need to return for second and third days of evaluations after their first, including all kinds of labs, blood work, doctors’ reports and an endocrinologist for Melissa, who is diabetic. This has caused financial difficulties for the family beyond their norm, she said.
“We had $3,000 saved because we thought the requirement would be $3,000,” based on research the family had done, Melissa said. “The second appointment, they tell us we have to come up with twice that amount. When you’re on dialysis, there’s a supplemental analysis the American Kidney Fund picks up. Medicare only covers 80% of the treatment. You have to have a supplemental policy cover the other 20 percent.”
But after the transplant, the fund no longer pays for the supplemental policy, leaving the Bishops to cover the premium, she said.
“Tampa took that and multiplied it by 12,” Melissa said. “They told us we wanted to have a year (of funding) saved up, which is a bit of a jump start but not that much of a jump start. Something could happen with layoffs; my husband could lose his job. Even after I get a transplant, I’m probably not going to be able to work. I have to take care of Andrew, so I can’t work, and my husband has to bring in all the money for our living expenses, plus the extra premium.”
Even with transplants, life would remain difficult for the Bishops. Transplanted kidneys usually last 10-15 years, after which dialysis begins again. And that is the best scenario, with a proper anti-rejection medicine.
“When you have anti-rejection medicine, you have to take it at a certain time every day, and if it’s not precise, you risk losing the organ, and that’s such a gift,” Melissa said. “My brother has considered being evaluated as a donor for me. Just because you have someone to give a kidney doesn't mean its going to be a match. They have a rigorous process before being approved to be a living donor. If they get approved, you’re in right away with the surgery.”
If Andrew received a transplant, he would need to remain out of the public for six months to protect his immune system, she said. That would include missing school.
This would inhibit Andrew’s dream of running a series of businesses, including dog walking, house sitting, pet sitting and tutoring computer classes for young children.
Despite all of this, the Bishops have taken time to count their blessings.
“My mom relocated from New Jersey to live here while I was waiting for my transplant,” Melissa said. “She drove down in September when I had an infection. She decided to stay. It’s a huge gift. She helps so much, cleaning, cooking.
‘My husband’s parents have come to help us while she's back in New Jersey. I could not do everything by myself; I’m so grateful for their support. Andy would have to homeschooled; it would be very hard to get to all the doctors’ appointments we have to go to. We’re very blessed to have family here. I know many families who do not have that.”
The family also took a trip to San Francisco just before Thanksgiving, thanks to the Make-a-Wish Foundation, which enabled Andrew to meet Pixar Studios personnel and see how they animated, he said.
Plus, Andrew has an interesting hobby.
“I am a fire alarm collector,” he said. “I own about 16 fire alarms. There are lots of fire alarm brands. I collect fire alarms because I’m very fascinated with them, and I want to make my own fire alarm.”
Although Melissa wants to help get Andrew another fire alarm for Christmas, finances are difficult. She understands most people also have problems and cannot contribute, but every contribution she receives is a big help, she said.
“Our expenses are never going to end,” she said. “If we have two people in one family on dialysis, we need to come up with $1,000 a month.”
To support the Bishops or find more information, go to m.helphopelive.org/campaign/5992 and Facebook.com/helpmelissaandandrew.
Contact Zak Kerr at [email protected].