NICHOLAS MERCER<\/p>\n
THE CENTRAL VOICE<\/p>\n
POINT LEAMINGTON, N.L. Kelly Earle is an expert in navigating the halls of the Janeway Childrens Hospital in St. Johns.<\/p>\n
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.<\/p>\n
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.<\/p>\n
Earles probably seen too much of the Janeways hallways and waiting rooms.<\/p>\n
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.<\/p>\n
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.<\/p>\n
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.<\/p>\n
James fits both of the criteria.<\/p>\n
(Trikafta) is the only hope for Sammi other than therapy and a lung transplant, said Earle.<\/p>\n
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.<\/p>\n
An online petition started by Cystic Fibrosis Canada currently has over 31,000 pledges for action.<\/p>\n
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.<\/p>\n
Sometimes Ill look at stuff about Trikafta on the computer and Ill have to walk away, said Earle. Ill think (Sammis health) could be changed in a couple of weeks.<\/p>\n
Her daughter often stays in the same fourth floor room for her two week stays. They call it James bedroom.<\/p>\n
Earle doesnt know the exact room number, but the way to it is singed into her memory.<\/p>\n
She gets there by instinct and muscle memory.<\/p>\n
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.<\/p>\n
Crashing down<\/p>\n
James was diagnosed with cystic fibrosis at 33 months old. Until then, she always had health problems and couldnt keep food down.<\/p>\n
The news sent shockwaves through Earles world.<\/p>\n
My world crashed then, she said. Any normal that I knew before that was shattered.<\/p>\n
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.<\/p>\n
James often experiences bouts of coughing that lead to nausea. She might lose a couple of pounds when this happens.<\/p>\n
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.<\/p>\n
CF is progressive, said Earle. The healthiest she is, is right now.<\/p>\n
At the end of each day, Im thankful that we got through that day. Only thing I can say is that this is a good day.<\/p>\n
Sometimes, James sheds tears as she goes through a procedure during those long hospital stays. They never last long and shell apologize shortly after.<\/p>\n
She is a strong person and her mother marvels at her strength.<\/p>\n
The things that Sammi have had to go through, me personally, I wouldnt be able to do them, said Earle.<\/p>\n
Earle will catch herself watching her daughter as she scrolls through YouTube and becomes engrossed in her favourite videos.<\/p>\n
Her mother will experience an explosion of memories. Shell see James cutting a cake as the 2019 Janeway Childrens Miracle Network champion and the subsequent trip to Florida they took because of it.<\/p>\n
In her minds eye, Earle sees a smart and bubbly girl who meets every day with a smile.<\/p>\n
You make it fun. You take lots of pictures, you make lots of memories and you have lots of fun, she said.<\/p>\n
nicholas.mercer@thecentralvoice.ca<\/a><\/p>\n <\/p>\n Originally posted here: <\/p>\n Point Leamington mother hopes Canada will green light latest cystic fibrosis treatment - The Telegram<\/a><\/p>\n","protected":false},"excerpt":{"rendered":" NICHOLAS MERCER THE CENTRAL VOICE POINT LEAMINGTON, N.L. Kelly Earle is an expert in navigating the halls of the Janeway Childrens Hospital in St Continue reading