3-year-old P.E.I. boy robbed of his sight by rare cancer

Verity Kislingbury says her three-year-old son, Jake, wants her to sleep by his side so he knows she's there.

Jake can feel his mom. But he can't see her.

A rare cancer has robbed the blonde-haired little boy of his sight. He's now in a Halifax hospital fighting for his life.

"I sleep in the bed with him just because he can't see. He just wants to feel me or know that I am right there," Kislingbury said from her son's bedside at the IWK Children's Hospital on Monday.

Kislingbury said it has been every parent's worst nightmare.

"I don't know, you just hope they are wrong. You pray for a miracle," Kislingbury said, her voice breaking with emotion. "You just want to protect your kids, right? It's hard because then they told us it was cancer as well so it's kind of that double shock of he's going to be blind and then it's cancer."

Rare form of cancer

Jake has been diagnosed with a rare and rapidly growing cancer called Burkitt's lymphoma.

According to the Canadian Cancer Society, Burkitt's lymphoma most often strikes children and young adults, and more often young boys than girls.

Kislingbury, her husband, Dave, Jake and their other son, William, seven, live in Canoe Cove.

Jake had been complaining about a headache for a couple of weeks. He was being treated with over-the-counter medication, but that didn't seem to help.

At first, doctors thought it was an ear infection.

But Kislingbury said she knew something wasn't right. On May 10, she and her husband decided to take Jake into emergency at the Queen Elizabeth Hospital in Charlottetown.

'He kept asking for the lights to go back on'

As they got him ready to head to the hospital, Jake complained about the lights being really bright. By the time they got him to the car, Jake couldn't see. He was blind.

"He kept asking for the lights to go back on," his mom said.

An emergency scan discovered a mass on Jake's brain resting on the optic nerve. Jake was immediately airlifted to the IWK in Halifax with his mom by his side.

In Halifax, they performed an MRI and then rushed him into surgery.

While doctors were able to remove part of the tumour, the damage had already been done — Jake is now permanently blind.

'We're still hoping and praying'

"We were really hoping that the time frame and the damage would not be too extensive to the eyes but unfortunately it was just too much. He's not able to see anything," said Kislingbury.

"We're still hoping and praying that one day that might change."

Now, Jake faces a gruelling combination of chemotherapy and other cancer drugs over the next eight months.

Doctors have told the family he has a 70 to 80 per cent chance of beating the cancer.

But the road ahead will be a difficult one. They have been told that Jake will lose his hair, develop mouth sores and the medication will make him very sick.

"We just tell him it's a yucky bug and the doctors are putting special medicine in that's like superheroes that are going to fight it off," Kislingbury said, with Jake by her side, as he's been since the family got the news.

"I go everywhere with him because I'm the only thing that brings him comfort. He's not as scared as he was initially. At first he was just terrified. You could tell. But he seems to be adjusting. Quicker than me."

'We are not going to be alone'

Family and friends have established a GoFundMe page, "Help Jake's family through his recovery." They have set a goal of raising $75,000 to help the family with expenses while they're in Halifax for the next seven to eight months.

Their extended family is all back in the United Kingdom. William is being cared for by family friends in P.E.I., waiting for his little brother to come back home.

The family talks on FaceTime to stay connected, as much as they can when they are more than 300 kilometres apart.

Jeannie Pitts, a family friend who started the GoFundMe campaign, said she's been overwhelmed by the response to the fundraiser so far.

Pitts said they are the closest thing to family the Kislingburys have in P.E.I.

"When this tragedy happened with young Jake, I knew that they would be in desperate need financially," said Pitts.

"They have a very tough road ahead of them. We love and care about this family and so we're just trying to do all that we can do for them."

Kislingbury said she's grateful for all the support.

"I know we are not going to be alone moving forward."

Kislingbury said she's set a goal to have her family together for Christmas, back home in Prince Edward Island. Jake will be by her side.

"And I don't want to go to a thought where it would be any different," she said.

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