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Point Leamington mother hopes Canada will green light latest cystic fibrosis treatment

Point Leamington's Kelly Earle is hoping Health Canada will give the go ahead to a new drug called Trikafta intended to help with the strain of cystic fibrosis her 13-year-old daughter Sammi-Jo James struggles with. Here, James is shown with her trophy for being named the 2019 Janeway Children's Miracle Network Champion. CONTRIBUTED
Point Leamington's Kelly Earle is hoping Health Canada will give the go ahead to a new drug called Trikafta intended to help with the strain of cystic fibrosis her 13-year-old daughter Sammi-Jo James struggles with. Here, James is shown with her trophy for being named the 2019 Janeway Children's Miracle Network Champion. CONTRIBUTED

NICHOLAS MERCER

THE CENTRAL VOICE

POINT LEAMINGTON, N.L. — Kelly Earle is an expert in navigating the halls of the Janeway Children’s Hospital in St. John’s.

For the last year, Earle and her 13-year-old daughter Sammi-Jo James have visited the Janeway once a month for checkups. Those visits can turn into 14-day stays as James is treated for cystic fibrosis, a disease which attacks her lungs and digestive system.

The Point Leamington resident has no problem showing someone how to get to the cafeteria or find a certain hospital wing. When she escorts people around, she will tell herself she is a tour guide.

Earle’s probably seen too much of the Janeway’s hallways and waiting rooms.

While those trips to the Janeway are sure to continue well into 2020, Earle has some renewed hope that a new treatment for her daughter could be on the horizon.

A new drug named Trikafta was approved in the United States in October and it offers a game-changing treatment for those with cystic fibrosis. It has not been approved by Health Canada.

Under the Food and Drug Administration, Trikafta was approved for use by cystic fibrosis patients 12-years-old or older and who have the most common form of the disease.

James fits both of the criteria.

“(Trikafta) is the only hope for Sammi other than therapy and a lung transplant,” said Earle.

Earle joins a long list of Canadian patients who are calling for all levels of the Canadian government to bring this drug to the country.

An online petition started by Cystic Fibrosis Canada currently has over 31,000 pledges for action.

Earle has spoken to Coast of Bays-Central-Notre Dame MP Scott Simms, her federal representative, about helping to push the approval of the drug through Health Canada.

“Sometimes I’ll look at stuff about Trikafta on the computer and I’ll have to walk away,” said Earle. “I’ll think (Sammi’s health) could be changed in a couple of weeks.”

Her daughter often stays in the same fourth floor room for her two week stays. They call it James’ bedroom.

Earle doesn’t know the exact room number, but the way to it is singed into her memory.

She gets there by instinct and muscle memory.

“If (James) gets admitted it is a relief,” said Earle who always packs for a 14-day stay ahead of their monthly Janeway trip. “I know she is going to get better.”

Crashing down

James was diagnosed with cystic fibrosis at 33 months old. Until then, she always had health problems and couldn’t keep food down.

The news sent shockwaves through Earle’s world.

“My world crashed then,” she said. “Any normal that I knew before that was shattered.”

Her life became filled with hospital trips as the Janeway, and Ronald McDonald House became a second home. It also filled with treatments at home and school.

James often experiences bouts of coughing that lead to nausea. She might lose a couple of pounds when this happens.

In November, she had a feeding tube placed in her stomach to deliver nutrients she needs. Along with medication, she uses this tube to feed for 10 hours at night.

“CF is progressive,” said Earle. “The healthiest she is, is right now.

“At the end of each day, I’m thankful that we got through that day. Only thing I can say is that this is a good day.”

Sometimes, James sheds tears as she goes through a procedure during those long hospital stays. They never last long and she’ll apologize shortly after.

She is a strong person and her mother marvels at her strength.

“The things that Sammi have had to go through, me personally, I wouldn’t be able to do them,” said Earle.

Earle will catch herself watching her daughter as she scrolls through YouTube and becomes engrossed in her favourite videos.

Her mother will experience an explosion of memories. She’ll see James cutting a cake as the 2019 Janeway Children’s Miracle Network champion and the subsequent trip to Florida they took because of it.

In her mind’s eye, Earle sees a smart and bubbly girl who meets every day with a smile.

“You make it fun. You take lots of pictures, you make lots of memories and you have lots of fun,” she said.

nicholas.mercer@thecentralvoice.ca

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