But some things can’t wait. And when it became clear in August that their daughter Emily needed another bone marrow transplant, Jill and Matt Heaps did not hesitate, even though they knew it meant costly post-op prescription drugs that make dark alley drug deals look downright affordable.
Some of the pills run as much as $100 a week, and Emily takes as many as 20 pills a day.
The drugs are designed to help Emily’s body regenerate the T and B blood cells that make up an effective immune system.
When Emily was born, she didn’t have any T and B cells. She suffered from a genetic condition called severe combined immunodeficiency, SCID for short. SCID is also known as “Boy in the Bubble Syndrome,” named for young boys who lived inside a bubble to avoid infections and almost certain death.
Emily never lived inside a bubble because by the time she was born, science had discovered that SCID can be countered by bone marrow transplants from family members who have a similar genetic makeup. When she was 2 months old, Emily got bone marrow from her older sister, Jacqueline, and after two and a half years of almost complete isolation — and plenty of drugs — she acquired enough of an immune system that for the first time she was able to go outside of her house. By the age of 5, she started kindergarten.
But she wasn’t growing, and a return visit to the doctors revealed that her body wasn’t regenerating the T and B cells Jacqueline had given her.
It was back to the drawing board, or in this case, the operating table.
In August, 12-year-old Jacqueline submitted to another painful surgery to again donate some of her bone marrow to her little sister.
Now Emily is back in isolation — living in Lehi’s cleanest home and unable to attend first grade with her classmates.
But if all goes well, second grade is a distinct possibility.
“We are very, very hopeful. We’re hoping this time she’ll be cured,” says Emily’s mother, Jill. “The doctors say the odds are really good. But we won’t know for about a year, maybe two.”
In the meantime, there are plenty of pills to buy, and unlike hospital bills that are often capped by insurance companies, the Heaps have no such ceiling on their prescription drug costs.
It isn’t in the Heaps’ nature to make this anyone else’s problem, but their neighbors see the situation differently. They have decided to be the Heaps family’s immune system.
Several of them have banded together to organize a concert tonight to help with Emily’s medical costs. Tamara Bell, a 29-year-old mom with a 6-year-old daughter who loves to play with Emily, is one of them.
“When we found out Emily needed this second operation, we decided we wanted to help support her,” Tamara says. “The concert idea just clicked. It’s something we can do. All sorts of people have volunteered to help.”
The performers will include, among others, Tamara on piano, vocal soloist Ruth Clark, Tabernacle Choir soloist Shane Warby, violinist Leandra Gibson, cellist Breanna Gibson, soprano soloist Tiniel Williams, and a local children’s choir.
“It’s going to be an eclectic sort of program,” Bell says.
Showtime is 7 p.m. at Lehi Jr. High, 700 E. Cedar Hollow Road, and admission is free — but there will be a huge jar for voluntary donations.
“This is such a good cause. Our goal is to raise as much as we possibly can,” says Tamara, who notes that anyone unable to attend can donate at any Bank of American Fork or Utah Community Credit Union branch — under the Emily Heaps Fund.
For their part, the Heaps’ are overwhelmed.
“It’s always uncomfortable when people are providing service,” Jill Heaps says. “But we are so grateful because we know that we need it. And more than that, we know we have all this wonderful support.”
Bailouts can be a beautiful thing.
Lee Benson’s column runs Sunday, Monday, Wednesday and Friday. Please send e-mail to firstname.lastname@example.org and faxes to 801-237-2527.
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