With Joy and Art

Remembering Their Cousin Japreet

By: Dana Ewachow

JoyArt“She was a happy child. She loved art,” says Gagan Grewal, gesturing towards a framed picture of a feather that her young cousin, Japreet, had made.

I sit across from Gagan on a couch in her livingroom. Japreet’s parents live next door. “Her room is still her room,” she says, admitting they haven’t changed a thing. She describes the family’s current life as incomplete. I can sense this on the couch. It’s in the way that Gagan talks. It’s in the photographs that sit on the tables. This home aches. “You can’t make a puzzle with a missing piece,” she tells me.

Japreet’s condition was a complete mystery to her cousin. With a family that had no history of serious medical issues, Japreet’s physical health was strange and scary. When she was eight, she was suffering fevers three or four times a year. She caught pneumonia and was in and out of Sick Kids hospital. After seeing Dr. Chaim Roifman, they discovered that Japreet had a STAT 1 mutation, a primary immunodeficiency.

“We never thought it would be life threatening,” said Gagan.

In March, Japreet went back to Sick Kids after getting shingles. STAT 1 was targeting her major organs. Her bloodwork revealed that she had zero white blood cells. A month later, she was diagnosed with HLH (Hemophagocytic lymphohistiocytosis). The rarity of the condition was staggering; even the nurses didn’t know about the condition. She had three seizures in the hospital. Biopsies and spinal taps became routine. The family adapted to the hospital terminology and the hospital life. They stayed at the Ronald Macdonald house. Japreet’s siblings stayed with their grandparents, since their parents were never home.

It seemed like the only option for Japreet’s improvement was a bone marrow transplant. The doctors admitted that she had a slim chance of surviving the operation. If the transplant was successful, Japreet would face problems like being susceptible to disease and being unable to conceive later on in life. The family pushed forward, willing to do anything for Japreet to get better. They started searching for a donor through bone marrow drives. In two to three weeks, they found a donor that was a match.

After going through a week of intensive chemo, Japreet returned to Sick Kids for her transplant. She was ill after the operation; she was vomiting regularly and had to be admitted to ICU with a breathing tube. Her health deteriorated. The HLH was back and taking over her body. The family was told that her organs would start to fail. An experimental medication from England was brought over to wipe out the HLH, but it proved useless.

First her liver started the fail, then her kidneys, and then her heart. At 5am on October 31st, Japreet passed away. “We would do anything to have her back,” Gagan says.

Japreet’s family, friends, and peers have put their hearts into honouring her memory. Her school tributes her every year with a “Pink and Purple Day”, which were her favourite colours. Her teachers would often help out and make dinner for the family. Japreet’s friends bring cards for her mother and toys for the kids.

After several months, Gagan and her cousins got together to honour Japreet’s memory and her love for art. With the help of Immunodeficiency Canada’s CEO Richard Thompson, they got the ball rolling and created an art scholarship for Japreet.

They completed their first fundraiser last July and raised over $10,000. Last year, they returned to the Ronald Macdonald House for the first time since Japreet was staying at Sick Kids, to throw a charity dinner for the families living there. The feeling was overwhelming, but the dinner was a success. They have another fundraiser lined up for June and another dinner lined up for July. Last year, they did balloon release on October 31st for her. This is a tradition they wish to keep. Otherwise, as a way to keep Japreet’s memory alive, they promote their cause of art and joy for children with PI.

“It gives us hope,” says Gagan, “and carries Japreet’s spirit.”

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