Friday nights at the Heilmans’ home in Valrico follow a familiar pattern. The kids—eight-year old Halle, five-year old Neeley and threeyear old Ben—settle in by the TV for pizza and a movie. Parents Jill and John always wanted a big family, but didn’t quite envision this. “A lot of my friends have pizza night with their kids on Fridays,” says mom Jill. “Ours just happen to have medicine with it.”
Sometime between the coming attractions and the movie, the family gathers around Halle on the sofa. They bring bandages, alcohol wipes, yards of tubing with a needle on one end and a syringe in a special pump on the other. The needle goes under the skin on Halle’s tummy, delivering a slow infusion of antibodies to fight infections.
Halle has a form of primary immune deficiency. So does her brother Ben. And sister Neeley may be showing signs of one, too.
“We kind of compare it to ‘the boy in the bubble’— that movie from the 70’s—that their immune systems don’t work and they can get very sick from infections,” mom explains.
It all started a year after Jill and John got married. Despite concerns that they might not be able to have kids, Jill gave birth to a daughter. “Halle came along a little premature and had a number of medical issues,” she recalls, “but we thought it was all preemie stuff.” Weeks later, further testing showed a chromosomal abnormality. “We were told she may be mentally handicapped. She may never walk, may never talk, may never eat on her own. She was on a feeding tube for five years.”
And it seemed she was always sick—sinus and ear infections, tonsillitis. On top of it, the young family moved several times, including a year spent in Tennessee. “We were on our fourth pediatrician by the time she was about a year and a half,” says mom.
By that time, the Heilmans were back in the Tampa Bay area and part of the All Children’s family. Halle spent twelve hours a week in various therapies at All Children’s Specialty Care of Largo, working to meet developmental milestones. Mom called it “our play group! We didn’t do Gymboree, we did All Children’s—and we have so many fond memories. Those were our friends, our family.”
Halle made friends in the hospital, too, where she seemed to be admitted more frequently for more serious infections. Around age two, an intestinal bug called rotavirus landed her in All Children’s for nine days. Dad John remembers, “I kept asking Jill—how come? It just seems like she cannot beat this thing. How long does it normally take kids to get over it?”
“That was probably the worst hospital stay,” mom agrees. “All these kids kept coming in with rotavirus, getting better and leaving— and there we stayed.” Soon after, a panel of blood tests showed Halle’s immune system is incapable of producing a certain class of antibodies.
Thankfully, says John Sleasman, MD, Robert A. Good Professor and Chief, Division of Allergy, Immunology & Rheumatology at USF, Halle’s immune deficiency can be compensated for by regular infusions of the antibodies she lacks. It’s even a treatment she can do at home.
“I wouldn’t just say there’s a treatment,” dad explains. “There’s a fabulous treatment. This treatment saved our daughter’s life. Getting that once a week—that’s what keeps her alive, that’s what keeps her healthy.” Mom adds, “Halle has energy, she can go to school. She can be around other kids without getting sick. She can have a LIFE.”
That life now includes two siblings— middle sister Neeley and baby brother Ben. Even during those pregnancies, Jill says, “mother’s intuition” told her that Neeley was going to be fine—but Ben would have problems. And that’s been the case. Neeley’s been the “mostly healthy” child who only recently began showing a decrease in certain antibodies in her blood.
Ben, on the other hand, was born premature with medical problems— though no sign of the chromosomal abnormality Halle has. Before age two, Ben went through two serious bouts of pneumonia that at one point landed him in All Children’s ICU. Now diagnosed with a different form of immune deficiency, Ben gets antibodies once at month at All Children’s Infusion Clinic.
Ben’s first infusion was enough to elicit tears from his normally stoic sister Halle. Mom remembers her asking, “Why mommy? Why does Ben have to go through everything I go through?”
“You know, when you dream about having a family, you don’t think about these things,” Jill reflects. But now, “We live for those Sundays where everybody’s healthy and we can play on the swing set, swim, eat ice cream and literally do nothing as a family. That’s what you had dreamed of parenthood to be about. And we can have some of those days now.”
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