A Concealed Connection?
Published on in Children's View
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Published on in Children's View
By Theresa Everline
Ben Banks Jr. was an inquisitive, charismatic kid with mild autism who was obsessed with cars. When he got a new toy car, he’d make a video as he scrupulously examined it — nearly 200 of these reviews are on his YouTube channel. When he met an adult, he was excited to learn what type of car they drove, “even if it was just a plain Ford Taurus,” says his father, Ben Sr., with a laugh.
When Ben Jr. was 6, he was diagnosed with autosomal recessive polycystic kidney disease (ARPKD), a rare genetic disorder that affects children, causing fluid-filled cysts to develop on the kidneys. Although Ben Jr. was healthy, with just a mildly distended belly, ARPKD can eventually cause kidney failure. When Ben Sr. and his wife, Marie, thought of their son’s future, they pictured “storm clouds ahead.” Kidney failure. Decreased liver function. Kidney transplant. These are the scenarios they imagined could happen.
Instead, the unimaginable happened: In 2017, when Ben Jr. was 10, they lost him to a brain aneurysm.
All the physicians who cared for Ben Jr., from his pediatrician to the hospital doctors who “moved heaven and earth to try to save him,” as his father puts it, are in the Pittsburgh area. But now the Bankses have turned to a physician-researcher at Children’s Hospital of Philadelphia who aims to determine what, if any, connection there is between ARPKD and brain aneurysms.
After losing their son, the Bankses, full of anger and helplessness, contacted the national PKD Foundation. They weren’t sure what they were looking for. “We were like, ‘Let’s see where this goes,’” says Ben Sr. They wanted to find an expert in ARPKD. The foundation sent them to Erum Hartung, MD, MTR, a pediatric nephrologist at CHOP who co-directs the Combined Kidney/ Liver Program, a clinic for patients with genetic diseases like ARPKD that affect the kidneys and liver.
“There are two types of PKD that are distinct, but cousins,” explains Hartung. The adult version carries a well-known risk for aneurysms. The thinking is that a gene that helps the kidney form properly is defective, and “this gene might also be involved with regulating how arteries function and whether they’re structurally intact,” says Hartung. In children with ARPKD, “There are only five or six reported cases of aneurysm.” But perhaps a similar connection between the kidney disease and the blood vessel structure exists.
When Ben Jr. complained of a headache and queasiness around 8 o’clock one night, “We thought it was a flu that came on in a rush,” says Marie. Around 2 a.m., he had a seizure. “He was stiff as a board,” says Ben Sr. “His brain had been bleeding for six hours.”
“If we would have known that aneurysm is a possibility, we would have seen the warning signs and been prompted to act faster,” says Marie.
After hearing from the Bankses, Hartung put together a proposal and a rough budget for a study to test whether children with ARPKD have abnormal blood vessels. A gift of $27,000 would get the study off the ground and establish the Benjamin Banks Jr. Memorial Research Fund.
“We come from a middle-class background,” Ben Sr. says regarding that sum of money. But he and Marie started to think creatively. At one point they asked a family friend who works in the pharmaceutical industry whether he knew of any drug companies that might fund the research. The friend’s first answer: “Let me see.” The friend’s second answer, a few months later: “I’ll fund it myself.”
While $27,000 is a lot of money for many families, it is far from the millions often invested in other disease research. But it’s the kind of gift that can fuel targeted studies. The gift will also serve as a catalyst: Hartung applied for a grant from the PKD Foundation to expand the study’s scope and will learn in May if she’s been selected.
If a link is found between ARPKD and aneurysm, caregivers can be on the lookout. “Or kids with ARPKD would get regular CT scans to catch it before catastrophe happens,” says Marie. The Benjamin Banks Jr. Memorial Research Fund could prevent other families from going through the sudden, heart-wrenching loss of a child. Says Marie, simply: “We’re just trying to do some good in our son’s name.”