The O’Ryan Project moves us closer to ending cystic fibrosis
When Patricia Phillips cuddled her first baby, Ryan, to her breast, she knew something wasn’t right. A year later, her daughter Kara had similar behaviours.
Both were subsequently diagnosed with Cystic Fibrosis. Called the children’s disease, Patricia was told not to expect either of her children to live past age 10. In 1982 and 83 when her babies were born, Cystic Fibrosis (CF) was considered a child’s fatal disease.
1 in 25 people carries the CF gene. 1 out of every 2800 children born will have CF.
Ryan Lazazzera beat the odds. He lived past age 10. But he died at age 16 waiting on a donor list for a lung transplant that just didn’t become available. Sister Kara is now 31, with a much different prognosis for her future, though she has lung challenges frequently these days. No parent should ever lose a child and Patricia Phillips and her now-husband Jeremy Pollard have both been touched by Cystic Fibrosis in their respective families. Jeremy’s neice, Kristen, gave birth last year to a CF baby.
While 30 years ago, CF patients were given a 10 year life expectancy, today the life expectancy is 48. What an enormous improvement! Patricia and Jeremy both believe that this improvement is totally connected to money raised for research that’s improved diagnosis and treatment. Still considered a fatal disease with no effective control or cure, the couple remains confident that CF will be totally controlled in their lifetime.
Today both Patricia and Jeremy and Ryan’s birth father all work towards fundraising to support research and a cure for this disease.
Ryan Lazazzera is the inspiration for the O’Ryan Project Golf Tournament held at the end of May at National Pines every year. The first golf tournament was Mayor Rob Hamilton’s tournament six years ago. Since then the O’Ryan Project has held that date and gone ‘solo’ with its efforts and raised so far over $165,000 for research and patient care. The project, which Jeremy Pollard puts a tremendous energy to, raised $13,000 in its first year and over $27,000 last month. This is a real legacy to Ryan’s life.
The O’Ryan project also brings together Jeremy, and Ryan’s uncle and birth father. Every October the men play in a band together at Sticky Fingers and each time they raised $3000-$4000 for the Oryan project. Now, that’s co-operation for a cause!
The O’Ryan golf tournament was sold out this year, at 144 players. The first five years, the organizers had a bit of a struggle to get over 112 players. Many, many of the players have been there since the beginning. Same with sponsors for the event… Northern Electronics, Moffatts Northwood Mazda, The Examiner. Previous sponsors include Bank of Montreal and Nesbitt Burns and new sponsors this year embraced Buttcon Ltd and World Source Financial.
“Our goal for the golf day is for everybody to have a good time and we want them to know about Cystic Fibrosis as well. We have effective speakers every year so we have different points of view,” says Patricia. “We’ve had a transplant recipient, a doctor, a parent of a CF baby. The speaker really matters because it triggers people’s giving throughout the rest of the year.”
While Ryan and Kara both had limiting lifespan diagnoses, Patricia looks at Jeremy’s one year old great-neice and declares emphatically… “there will be a cure in her lifetime, for sure.”
Last year the provincial Cystic Fibrosis organization awarded Jeremy and Patricia with its grassroots volunteer award. This year they received the National Breath of Life award, given annually. The national office attended the tournament and surprised the couple with the award later in the evening.
“In a way,” says Jeremy, “we’d like to give this to Ryan.”
So well deserved. Caused by Ryan. Achieved by Kara, Patricia and Jeremy.