In April 2016, at just two years old, Singh was diagnosed with G6PD, a rare enzyme deficiency and blood disorder that is lifelong and incurable.
The disorder is set off by a long list of chemical, food and stress triggers, including soy, beans, artificial blue dyes and viruses.
Michael Singh, King’s father, said when his son is most stressed or agitated, his body goes into what he calls a “crisis mode.” His blood cells rapidly burst, releasing so many chemicals that his kidneys would not be able to handle it and shut down.
G6PD appears to be a genetic condition, Singh said. King’s mother, Shameeza, also has it, as does his young brother, Mesiah. King’s youngest sibling, his two-year-old sister Faith, will most likely have it as well.
“That’s something he and his brother have to live with forever,” Singh said.
When King first got sick four years ago, doctors found out it wasn’t a “common disease,” his father said. He had multiple blood transfusions before seeing a hematologist and being diagnosed with the enzyme deficiency.
To avoid the triggers, King has a restricted diet. He does not have beans or tofu, and usually sticks to organic chicken with no hormones added.
His oncologist said the goal is to keep King away from viruses, so he and Mesiah are home-schooled. Faith, meanwhile, does not go to daycare to avoid bringing back any illnesses.
Michael, who has a nursing background, stays home to care for his three children. He said that’s easier than hiring outside help, like a babysitter, who can struggle keeping up with the dietary restrictions, triggers and medications.
Just two months after King was diagnosed with G6PD, he was diagnosed with Acute Lymphoblastic Leukemia (ALL). For three-and-a-half years, he went to daily chemotherapy treatment. He has had countless spinal taps and 75 pills of medication every month.
“We were all screaming and crying, we couldn’t believe it,” Singh said after they learned King had leukemia. “We accepted [G6PD], this is what we have to do, and then boom, here comes another one.”
Just prior to King’s cancer, Singh said, Mesiah was born premature at 27 weeks. He was also born with other medical issues, and had surgery at three months old.
“We went from one medical crisis to another,” he said. “It just got more severe.”
Shameeza said Faith also has chronic eczema. She would itch her skin “until it bled.”
Despite all of their children’s medical issues, the Singh family is counting their blessings.
“We’re just happy to open our eyes everyday,” Michael said.
“We take it minute by minute, there’s no other way,” Shameeza added. “If you think about it as a whole, it’s a lot and it’s overwhelming.
King’s chemotherapy treatment finished on October 21. His bone marrows and cells have been “suppressed” as a result of the chemo, his father said. At one point, he could not walk or talk.
“He’s basically like an infant,” Singh said. “He’s starting back over.”
The chronic, long-term side effects from the chemotherapy are considerable. King has suffered neuropathy, or brain damage, and leukoencephalopathy, which is brain swelling. He also has white brain matter loss from the toxicity of the treatment.
“Every single thing that he’s been through, he’s fought through it,” Michael said, “and made us strong in the process.”
“The pain and suffering they have to go through is heartbreaking,” Shameeza added. “There’s nothing you can do, so you try to enjoy the good times as much as you possibly can.”
The total costs of daily hospital visits, chemotherapy and medication have taken a toll on the Singh family. They had to sacrifice one income so Michael can stay home to care for the children and ensure King stays alive.
Shameeza spends most of her lunch breaks researching foundations and trying to figure out savvy ways to help the family keep afloat with their expenses.
She said she’s grateful that her health insurance covers roughly 70 percent of medical care costs. The family has to pay the other 30 percent out of pocket.
“MRIs, spinal taps, chemotherapy for three and a half years, it all adds up,” Michael said.
The Singh family is now in over $80,000 of medical debt, and is struggling month to month to pay their bills, keep the lights on and put food on the table.
Shameeza noted that they don’t qualify for any government help. King was also denied four times for Social Security, she said.
They started a GoFundMe last August to raise money to help defray some of the costs. The online fundraiser raised $7,808 from 153 donors, but fell short of their $100,000 goal.
“Even after treatment, the bills don’t go away,” she said.
King’s parents noted that G6PD is not prominent in the United States, so there’s not enough research done on the disorder. Even with the Acute Lymphoblastic Leukemia, Michael noted, doctors are still learning about late effects on children.
He said in the past 20 years, children have lived longer with the advances in pediatric cancer treatment. But doctors never knew children would have these late side effects, he said, so King’s story will be “part of the research” that will be helpful moving forward.
King started chemotherapy at Cohen’s Children Medical Center right on the border of Queens and Nassau County, which was close to the Singh family’s home in Queens Village.
But when the cancer did not go away, they sought a second opinion at Sloan Kettering Memorial Cancer Center in Manhattan, where they were told King needed more intense chemotherapy. Michael said his son was already having trouble with the standard chemo, so they sought a third opinion.
This time, they went to Boston Children’s Hospital, which they said was the best in the region. Their doctors agreed for more aggressive chemo, but said King could not backtrack after starting in the standard chemotherapy.
“It was a blessing in disguise because he couldn’t tolerate 100 perecent of the standard therapy,” Singh said.
Despite his ordeals over the past four years, King has become an advocate, and as his father described him, a philanthropist for cancer research organizations.
He is affiliated with the Leukemia and Lymphoma Society, Alex’s Lemonade Stand Foundation for Childhood Cancer, and the American Cancer Society.
While in chemotherapy treatment, Singh raised $3 million for the Leukemia and Lymphoma Society, his parents said. Subsequently, he was honored as the group’s Hero of the Year for 2020.
King has also volunteered at events, modeled during New York Fashion Week, walked to spread awareness about childhood cancer, and hosted drives to deliver toys to children like him. He recently hosted a toy drive with the St. John’s University women’s basketball team.
“I love seeing smiles on the little kid’s faces,” he said.
Shameeza also started a foundation in honor of her son.
“Many families wait until their child passes away to start it,” she said. “We didn’t want to do that.”
His family has diligently documented King’s journey battling cancer on social media and shared his story with everyone, from fellow children fighting cancer to dignitaries and the media.
As a result, King is the first child to ring the bell at the New York Stock Exchange. He has met Mayor Bill de Blasio, NYPD Commissioner Dermot Shea, and recognized by elected officials like Governor Andrew Cuomo, Congressman Gregory Meeks and Councilman Donovan Richards.
Acting Queens Borough President Sharon Lee declared January 24th as “King Singh Day” in the borough in honor of his fight against cancer.
Some of the 5,000 followers on King’s social media pages have also shared with the Singh family their own struggles, and how King’s journey has “inspired them to keep pushing everyday,” Shameeza said.
“His journey has inspired us everyday to get up,” she said. “King is going to the hospital everyday, getting chemo. If he can do that, I can do anything.”
“Not only are we shedding a light on our journey and our story, we’re showing the need for research and why we want less toxic medication,” Michael added. “No child should go through what ours went through, and he’s been through it all.”
King is still getting infusions and going through immunotherapy. His father said he’s working on building up his son’s immune system, which can take months.
But he couldn’t help but feel that “divine intervention” has played a role in King’s life, allowing him to beat the odds. Michael said that’s why they named their daughter Faith.
“He’s a literal walking miracle,” Singh said. “We feel like God has spared him for a reason. He’s inspiring.”