NORTH ISLAND, B.C. – Through it all – the pills, hospital visits, and hours of weekly therapy – Maysa Milligan’s spirit shines through.
Maysa is a cheerful seven-year old who enjoys riding her pink bicycle, playing with friends, playing T-Ball, and jumping on the trampoline in the backyard of her Union Bay home.
But twice a day Maysa must pause her play for 40 minutes while she inhales medicated steam through a nebulizer and undergoes physical therapy.
And with every meal she must take handfuls of pills in order to digest the food.
Even so, she is chronically underweight.
Maysa has Cystic Fibrosis (CF), a life-threatening genetic disease that affects one in 3,600 Canadian children.
CF is the most common fatal genetic disease affecting Canadian children and young adults.
There is no cure.
It causes various effects on the body, but mainly affects the digestive system and lungs, including progressive lung damage from chronic infections and aberrant inflammation.
While there are medications and treatments to alleviate symptoms and prolong life – and the last-ditch measure of double lung transplants for young adults – the current life expectancy is in the mid 30s.
Maysa’s mom Sarah said having CF has affected her little girl in every way. “Her life revolves around taking medication, and doing therapies to help her stay healthy and stay alive. If she did not take these medications and do her therapies, she would not be here today.”
Life revolves around hours of therapies, and literally hundreds of pills every week.
“She needs to take medication when she eats, she takes a lot of other medications, she does breathing treatments and physical therapy every morning before school and every evening before bed,” Sarah shared.
Since January, Maysa has had three bronchoscopies, one endoscopy, six weeks of oral antibiotics, two weeks of intravenous antibiotics, a month of steroids, a CT scan, and five chest x-rays.
Maysa recently spent two weeks at Children’s Hospital in Vancouver receiving intravenous antibiotics to fight an infection in her lungs. It’s just part of the life of a CF child.
“The life of a kid with CF is not like the life of a normal kid,” Sarah said. “But all the CF kids I know have such a good attitude about it. They just don’t know anything different and they just put up with all these therapies and procedures. They take it in stride because that’s all they know and they know that to stay healthy, that’s what they need to do.”
Maysa is “such a happy kid,” Sarah said. “She rarely complains… everybody we know, knows her as a a super sunny, cheerful, happy kid, and people often comment to me, what a bright spirit she has despite all the things she goes through in life.”
Walk To Make CF History
On Sunday, May 26, thousands of Canadians across Canada will be joining in the annual 3K ‘Walk To Make CF History.’
Funds raised at the walk go towards support and advocacy for CF care, and research to find a cure.
Campbell River’s annual event takes place at Penfield Elementary School, with registration at 10:15 a.m.
The walk starts at 11:00 a.m., followed by children’s activities, a prize draw, and a free BBQ courtesy of the Kinsmen and Dairy Queen.
Maysa will be at the fore on her pink bicycle.
Maysa said she hopes to see “millions” of people at the Campbell River walk.
She said the goal is to raise money which will “go to the scientists so they can stop Cystic Fibrosis.”
Sarah said the walk is an “amazing opportunity” to raise money for CF research.
“They’ve made so many discoveries about Cystic Fibrosis in the last 10 years, and it’s all because of the money that is raised at events like this,” Sarah added. “And because of money raised at events like the walk, we have a real hope for the future that a cure will be found. That, to me as a parent, is amazing because 20 years ago we didn’t have the hope for that cure yet and now we do.”
People are encouraged to walk with Team Maysa, or leave a message on the Team Maysa page at http://is.gd/AdI0Wy.
You can register online here or in person at the walk.
Donations are always welcome.