Shaya Culberson, 5 year’s old is the only child in Vanderhoof with Cystic Fibrosis. (Submitted photo)

Raising awareness about Cystic Fibrosis through a movie

B.C. mother shares the story of her child suffering from the fatal genetic disease

The Vanderhoof Kinettes are putting on a movie at the Grand Reo Theatre tonight to raise funds and awareness about Cystic Fibrosis.

Shaya Culberson, a 5 year old in the District suffers from Cystic Fibrosis, and the disease has no cure yet. The movie will begin at 7 pm tonight and all the funds raised will go to Cystic Fibrosis Canada for research to find a cure.

“Cystic Fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure. CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with the destruction of lungs and loss of lung function, will eventually lead to the death in the majority of people with CF,” states the Cystic Fibrosis Canada website.

Shaya Culberson was born with this disease. Her mother Terra-lynn Culberson shares Shaya’s story.

“Having a child with Cystic Fibrosis can be challenging. It has changed our whole life physically and mentally. It has been a roller coaster of emotions but she has also brought joy and an appreciation for simple things,” Culberson said.

“This community is quite amazing. It’s kind of hard. It’s one moment you know, because the idea of her living long is probably not going to be a possibility for us and other parents for CF, so it makes you appreciate things a little more and keep that in check,” she added

Culberson said her family moved from New Brunswick to Vanderhoof, B.C. in July 2018, primarily to access better health care services for Shaya. She is now being looked at by the doctors at Vancouver Children’s Hospital.

The five year old, takes many pills to live and stay as healthy as possible. Culberson said, Shaya takes 11 different medications a day, which equates to 39 medications a day, 273 a week, 1092 a month and 13,104 a year. She goes through four hours of treatments and physiotherapy a day, and over 6 hours if she has caught a flu or cold, added Culberson.

Added to that, Shaya spends nearly 64 days in the hospital a year which can increase in case of additional infections, she said.

“These statements about are not including the additional medicines that might be added for additional infections that may occur or in hospital stays which we have been going for, every couple of months as the CF team wants to figure out how Shaya’s body works and how to prolong her life and quality of life,” Culberson explained.

She said that it is hard to describe someone who has Cystic Fibrosis. When someone looks at people suffering from the disease, they seem fine, she said, adding, “there is not a lot of markers. The markers you see are so subtle that unless you know CF, you won’t see it. But everything internally is affected.”

The movie showing tonight is called Five Feet Apart and Culberson said it is the first movie ever to star someone who actually suffers from Cystic Fibrosis. She said it addresses a lot of important facts about the disease.

“The movie is showing across North America. The Kinettes brought it in personally to raise money for CF and when they found out we were here, they knew it would be something we would be interested in,” she said.

Shaya is the only child in Vanderhoof with Cystic Fibrosis and in Canada there are approximately 4,000 people who are fighting this disease, Culberson said.

Meanwhile, in terms of support groups for parents, she said it is difficult, because as families who have a child with Cystic Fibrosis, they can’t meet each other as bacteria can pass back and forth.

“They found out that when they did camps that some kids would come back home and die because one body can handle one bacteria and another can’t,” Culberson said, noting as a family they have to be careful with people they are interacting with.

However, online support systems do exist for parents, she said.

Shaya will be joining Sinkut View Elementary in the Fall and the reason they picked that school is because they have a nurse that used to work in the Children’s Hospital, Culberson said. Shaya will also have a special worker who will accompany her to assist with medication and other support she may need, she said.

“When she was born, I put her in a bubble and tried to protect her as much as possible. But putting her in a bubble, that’s no way to live. It’s hard. It’s sort of a balance between making sure she knows that you don’t touch your eyes, nose, ears, mouth – any ports of your body that bacteria would go into,” Culberson said.

“And to be cautious of people who have bacteria and wear masks if needed. Especially, winter time when everyone tends to get sick or if there is a lot of flu, then she stays home and we do some things there. But it is definitely a balance between letting them live and taking care of them.”

Aman Parhar
Editor, Vanderhoof Omineca Express

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