Zlotnik family starts GoFundMe campaign for their disabled granddaughter

By Ron Stang, Special to the Jewish News

Photos courtesy of the Zlotnik family

A fundraising campaign is under way for a suburban Windsor couple who, on the cusp of retirement, are now the unexpected guardians of a grandchild who has a rare genetic disorder.

Jack and Nina Zlotnik of LaSalle, members of Windsor’s Temple Beth El congregation, have become the de facto parents of their 16-year-old granddaughter Samantha and her 4-year-old sister Maggie, after the sudden death of the children’s mother and Zlotnik’s daughter, Robin, last December.

Robin, 38, who had had some chronic health issues since undergoing bariatic surgery a decade ago, unexpectedly died from Toxic Shock Syndrome as a result of a bacterial infection.

After being taken to hospital in late December where doctors believed she had a bowel obstruction (no obstruction was found) the next day Robin was placed on “full life support,” Nina says. She “never regained consciousness and by 2:30 in the afternoon she was gone.”

Samantha with mother, Robin, who died in December

Robin was in a common-law relationship with Joel Carriere, also of LaSalle, but Carriere, a tool maker who works 12-hour shifts, is in no position to be a stay-at-home dad and bring up the children.

So, the responsibility has fallen on the grandparents, both 64 and who had been expecting to ease into normal retirement life.

“The girls during the week basically live here with us and spend time with their dad on the weekend because of the hours that he keeps,” says Nina, originally from Oak Park and a longtime Canadian resident.

Samantha suffers from Cornelia de Lange Syndrome (CdLS), a rare disorder that manifests in physical abnormalities, and developmental and behavioral issues. Common physical features include conjoined eyebrows, a cleft palate and low front and back hairlines.

Intellectual and behavioral matters include low IQ and extreme difficulties learning, and hyperactivity, aggression and self-injury. Children may have trouble feeding and have gastroesophageal reflux and seizures.

Samantha doesn’t have many behavioral problems. “She happens to be a very mild-mannered, loving kid,” Jack says. And she does attend high school but has a special learning curriculum and is taught with smart boards and sensory tools. But “she has a capacity of a 1½ -year-old,” he says.

Samantha, 16, and sister Maggie, 4

At home, Samantha requires special and intricate care. This includes being fed through the stomach with injections of a nutrient solution through a PEG (percutaneous endoscopic gastrostomy) tube. She can’t properly swallow “so we bypass the need for her to swallow anything,” Jack says.

A GoFundMe internet campaign has been started by Robin’s brother of Farmington Hills and, so far, more than $11,000 has been raised toward the $30,000 goal.

Jack says the money will be used “not necessarily immediately but later on” for things like specialized diapers and the feeding device. “The bigger expense is her feeding supplies, which are a syringe and extensions,” he says. The PEG has to be changed twice a year “for about $600 a crack.”

While the Zlotniks, loving grandparents, are adapting to this new role later in life, Samantha’s father Joel says the aftermath of Robin’s death continues to be an ordeal.

“No one expected this,” he says. “She (Robin) was always sick or she always had problems but not like that, not to pass away.”

Asked how he’s coping, Joel responds, “Not very good. It comes and goes, it tears me apart, and then I’m OK for the next day and then just out of nowhere it’s just tearing me apart.”

To help the Zlotniks, visit gofundme.com/memorial-to-robin-help-to-fund-her-children.