Did you know that your version of Internet Explorer is out of date?
To get the best possible experience using our website we recommend downloading one of the browsers below.

Internet Explorer 10, Firefox, Chrome, or Safari.

Skip To Content
Volunteer Advocate

News

Holiday wishes are different for people living with cystic fibrosis
November 28, 2019

Holiday wishes are different for people living with cystic fibrosis
Families affected by fatal rare disease share what they want most this year

TORONTO (November 28, 2019) - Cystic Fibrosis Canada is launching their fourth annual Year End campaign featuring four CF families and their wishes for the holiday season. The campaign helps raise vital funds for CF research, care and advocacy initiatives to help Canadians with CF live longer and healthier lives. The campaign will run from November 28th to December 31st, and all donations made on December 3rd (Giving Tuesday) will be matched up to $30,000.

Some people wish for toys, books, a new computer and other items. For people living with CF, their wishes may look different during the holidays. Samuel Moreau from Quebec was diagnosed at age four. His holiday wish is to be rid of the disease. “Sometimes I just want to think about other things that don’t involve CF.”

All Michel Desrochers wishes for is to hear his infant son, Benjamin, breathe easily. Benjamin was one of the first infants diagnosed as a result of recently implemented newborn screening in the province of Quebec. “I haven’t decided how I’m going to explain Benjamin’s disease to him when he gets older. It’s not that I am afraid to, but I don’t want him to feel that his life is impeded because of CF.”

Although only nine years old, John Bennet has spoken at Cystic Fibrosis Canada events in Newfoundland. He tries to not let his CF get in his way. “But I do have to come in early from outside playing with my friends to get my physio and stuff done. I don’t like to leave early when no one else does,” he says. For John’s mother, Gillian Bennett, her wish is to see her son live a long and healthy life. John’s five year old brother, Noah’s wish is “that I could take his CF away from him for a day and I could deal with it for him.”

Erin and Emme Weil are one and a half year old twin girls from Ontario. Emme was diagnosed with CF at 12 days of age. First-time parents Danielle and Matt faced crushing worry, were overwhelmed with information, and had to cope with both a newborn at home and a newborn still in the NICU. Danielle’s wish is to have access to medications for rare diseases, and to see a Canadian rare disease strategy put in place. “(I want) access to medications that we are being denied and access to the powers that be to impress upon them the desperate need for change in how we evaluate new drugs in Canada.

-30-

Cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system progressive disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus leads to progressive loss of respiratory function. Mucus also builds up in the digestive tract, making it difficult to digest and absorb nutrients from food. There is no cure.

Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world’s leading charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada. Since 1960, Cystic Fibrosis Canada has invested more than $261 million in leading research, care and advocacy, resulting in one of the world’s highest estimated median age of survival for Canadians living with cystic fibrosis. For more information, visit cysticfibrosis.ca.

For more information, contact:
Kenya Francis, Associate, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 203
Tel: 1-800-378-2233 ext. 203
Email: kfrancis@cysticfibrosis.ca  

Lisa Hartford, Communications Director
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 235
Tel: 1-800-378-2233 ext. 235
Email: lhartford@cysticfibrosis.ca 


Back to Listing