Family raises community interest in Colleen’s Cure

Go Fund Me effort raises $2,000 in one day


Published on January 18, 2017

Colleen Mason, her mother and father Gail and Steve, and sister Renee Mason-Osmond are from Grand Falls-Windsor, a community that has come together to fundraise for Colleen to cover the costs associated with her upcoming liver transplant.

©Submitted photo

Renee Mason Osmond couldn’t believe her ears when she heard the diagnosis.

Her younger sister, Colleen Mason, was in great health and had run marathons the previous sin the summer of 2012. 

It was August, 2013, and Colleen was diagnosed with Primary Biliary Cirrhosis (PBC), a rare autoimmune disease that impacts the bile ducts in the liver. 

“I didn’t know a whole lot about it, but it was devastating knowing that she was eventually going to need a liver,” Mason Osmond said.

The time is now. 

Mason was diagnosed in August, 2013, however, she said she knew there was something wrong before then.

“I knew I was a different colour for years,” Mason said. “Trying to get makeup to match was near impossible.”  

She said doctors didn’t really noticed, and when they did check, her liver functions were all pretty normal.

“I was told when I was 25 that I might have fatty liver disease but that was almost 10 years before this,” Mason said. “I think that I had it then, to be honest. I think that I had it for a long time but they just figured out what it was in 2013.” 

Mason said she wasn’t really sick, was extremely fit, did the Tely 10 even, and taught fitness classes.

She was tired a lot, but didn’t realize this was different than anyone else’s energy levels, she said, and she just dealt with it.  

“For me it was just fighting through it all,” Mason said. “I had some pain but I dealt with the pain. I just pushed myself through it.

“But when I was diagnosed everything made sense.”  

Many symptoms

Mason, now 37, lives in St. John’s, where she is close to her liver specialists, and could receive testing – a lot of testing. Her parents, Gail and Steven Mason, and her sister still live in Grand Falls-Windsor.  

“Anything you can possibly have wrong with you, I’ve been tested for it,” Mason said. “I’m probably luckier than a lot of people in that way. I know exactly where my health is. I know everything that’s wrong with me, and I know that once my liver condition is healed, what I have to look out for. Most people never know that.”

After the diagnoses, she worked for a year and a half before the liver specialist found out she had some side effects she wasn’t prepared for.   

“She did some neurological testing and said my brain was suffering the effects of my liver disease,” Mason said.

She has hepatic encephalopathy; as a result, she can have confusion and emotional issues.  

“It looked like I had amnesia on my MRI so she took me off work,” she said.

“Now, if I’m really sick, it almost appears as I’m catatonic, I space right out and I don’t know what I’m saying.”  

She has developed ways of managing it. For example, if she plans to drive she does some basic math problems; if she gets five out of five correct, she can drive. If she gets three out of five; that’s her trigger not to drive.

The liver handles so many different things that people may not realize. For example, her liver does not naturally produce melatonin like most livers do, so she doesn’t sleep normally. She said she can sleep all day, but hardly sleeps at night.   

It also causes skin issues, and healing slows.

“Her clothes make her skin hurt,” her sister, Renee, explained. “Everything hurts all the time. She’s itchy all the time.”  

There is a lot of pain associated with the disease, as well as pain associated with the medication, Mason said. Sometimes she needs to use a cane to get around.  

Seeing her have to use a cane was a bit of a shock for her brother-in-law, Lee Osmond.  

“As bad as what it sounds too, we never really identified what it meant to have trouble with the liver until we seen her in St. John’s,” Osmond said. “This affects so much in the body. It really hit me hard when I was in St. John’s for a business trip and I met her for dinner and she was walking out with a cane.”

Mason also has autoimmune hepatitis, which happens in 30 per cent of PBC patients.   

PBC attacks your bile glands, Mason explained, which breaks down food.  

“So essentially I’m being malnourished because my body is not breaking down my food properly,” Mason said. “I’m not getting a lot of vitamins.”  

For example, vitamin K, which helps with blood clotting.

“Over Christmas I spent from Tibbs Eve to Dec. 27 basically in hospital,” Mason said.  

Mason and her mother spent from Dec. 13-17 in Halifax, where she met with the transplant team, a psychologist, dietitian, physiotherapist, anesthesiologist, surgeon, herpetologist, social worker, heart specialist, dental care people, and transplant co-ordinator for an assessment to see if she would be placed on the transplant list.

Dental health is one of the things they look at during assessment, and they took out her wisdom teeth.   

“I came home and one of my sockets opened up and I just kept bleeding and bleeding on Tibbs Eve,” Mason said. “I lost so much blood that they had to keep me in the hospital just in case I needed a blood transfusion.”

The next step

On Dec. 19 Mason found out she is on the transplant list.  

“I was happy,” she said. “It’s scary, it’s overwhelming because it’s major surgery, but at the same point, I’m sick now, and I might get sicker before the transplant, but once the transplant happens that’s the start of me getting well. For me, it’s a positive to have to go through this right now because I’ve been sick for God knows how long. I’ll be able to get back to normal life and probably be healthier than I’ve ever been in my life.”

Mason was told it could be between six months to a year before she gets the call to go to Halifax for the transplant. She was also told it’s a particular liver she will need because she is so small. Right now, there is nobody else on the transplant list in Atlantic Canada that is a match for her liver.  

 “It’s possible that it could come up tomorrow, or a year from now, but the next liver that comes up that’s small and O blood type, that one’s mine,” she said.

She was told to prepare to stay in Halifax for six to eight weeks if there are no complications. This will be a costly venture.  

Her family and friends, family’s friends, and even people she don’t even know, are getting behind her 100 per cent.

Mason’s mother went to Halifax with her for the assessment, and will be going with her for her surgery as her caretaker.   

“It’s required that someone be with me during the process,” Mason said. “Just for her to take the time out to go with me and be calm and patient — even though I know it’s not easy for her, because I’m her baby — I’m extremely humbled and thankful.”

Her sister Renee also works, but hopes to be with Mason for at least some of her time in Halifax.  

“My plan is to go up every second weekend just to give Mom a break,” Mason-Osmond said.

And the family is not just supportive emotionally, but are helping financially as well, planning fundraisers.  

“It’s really, really hard for me to ask for money,” Mason said. “I didn’t want to do that. When you are off on disability for two years and you are only making the minimum amount to pay your bills, and I have to eat a specific diet, for me to save money, it’s near impossible, and I’ve been doing this for almost two years. I’m broke. You have to ask for help. You have to. As much as you don’t want to, you have to.”

Riverside Convenience owners Renee Mason Osmond and Lee Osmond are helping to raise funds for Colleen Mason, who will be travelling to Halifax sometime in the next few months for a liver transplant.

©Krysta Carroll/Special to TC Media

Community pulls together to help

Renee Mason-Osmond said her sister, Colleen Mason,  is expected to need between $15,000-$20,000 to cover costs associated with having a liver transplant.

Last week Mason-Osmond decided she had to do something, and she began making contacts for events.   

People were willing, and in no time no time, a number of events were planned, starting this week.

Riverside Convenience, owned by Mason Osmond and Osmond, will be hosting an old-fashioned baked beans sale on Thursday, Jan. 19, with baked beans and a bread roll for $7.99. Orders can be placed at Riverside Convenience, 72 High Street, Grand Falls-Windsor, or by calling 489-6005. They are hoping to have lots left for people to drop in the day of as well.  

A yard sale will be held on Jan. 28 at St. Joseph’s Hall in Grand Falls-Windsor from 10 a.m.-3 p.m. with soup, sandwiches and chilli for sale. This will be followed by a concert with Joey Maloney and Greg Forward with admission by donation, from 7-9 p.m. Prizes will be available to be won.

Those wishing to donate items to the yard sale can drop off to the hall from Jan. 23-27 9 a.m.-12 noon, and 1-4 p.m.  

There will be a bowling event on Feb. 5 from 7-9 p.m. at Exploits Lanes in Grand Falls-Windsor. A limited amount of tickets will be $10 each and available at Exploits Lanes and Riverside Convenience starting on Wednesday, Jan. 18.

The family is also working out the details of an online auction.  

Anyone can donate through https://www.gofundme.com/colleens-cure, or send email money transfers to themasons709@gmail.com.

The GoFundMe page had $2,000 in the first 24 hours.  

“Somebody donated $500 that I don’t even know,” Mason said. “I’ve never met the person. That is incredibly shocking just to know that people are able and willing to donate to someone that they don’t know. The only word that I have for it is humbling.”

More fundraiser information will be posted on the Colleen’s Cure Facebook page as it becomes available. To find out ways to help, contact them through the Facebook page.  

There is another way to help, Mason said.

Last Friday, she spoke to OPEN (Organ Procurement Exchange of Newfoundland and Labrador) and found out the organ donor program is now run through MCP, not through the drivers licence.   

“You can go to the government website and apply for a new MCP card, it doesn’t cost anything, and you can update your donor information, and that way when you go into the hospital they are able to see right away that you are an organ donor,” Mason said.  

“For one organ donor it saves eight lives. Be an organ donor.”