By Sheila Phibbs
The Haldimand Press
CALEDONIA—Sarah Makkai was just 11 days old when her parents received the news that their newborn was sick – her heel prick test was positive for Cystic Fibrosis (CF). Though she struggled to gain weight as a newborn, there was no indication of the disease. Her mom, Deanna, recalls, “We had no idea what this genetic disease even was and my husband and I were very shocked since we have two healthy boys born before Sarah.”
Sarah Makkai
According to Cystic Fibrosis Canada, CF is the most common fatal genetic disease affecting 4,344 Canadian children and young adults. It is a progressive, degenerative multi-system disease that mainly affects the lungs and digestive system. There is no cure; in the past three years, half of the Canadians with CF who died were under the age of 34.
After Sarah was diagnosed, her parents met with the team at McMaster Children’s Hospital and treatment began immediately. Sarah had to take enzyme pills to help her digest and absorb nutrients, gain weight, and grow. At three months of age, she began inhaled nebulizer treatments and percussion chest physiotherapy twice each day.
Today, at almost eight years old, Sarah has inhaled treatments three times a day and physiotherapy twice a day. More of each treatment is required if she is sick. She takes approximately 20 pills a day and has to eat a high fat, high protein diet with extra salt. Her mom says, “These treatments are proactive to help keep her as healthy as possible and delay the deterioration of her lungs and to ensure she’s getting the nourishment she needs to survive.”
The Caledonia family is aware that individuals with CF are prone to lung infections, which increase the damage to the lungs. As a result, Sarah needs antibiotics several times a year. Regular clinic visits include blood tests, chest x-rays, and breathing tests, along with meetings with various medical team members to monitor her health. Deanna says, “We have been lucky to avoid hospital admissions so far, unlike many families with CF.”
Through this intense health care regiment, Deanna says, “Sarah is a bright light in the lives of everyone who knows her.”
Her favourite activities are singing and playing on her trampoline, both of which are highly encouraged as they provide exercise for the lungs. But it also means that she needs even more calories and salt to aid her growth and replenish the loss of salt during physical activity. Deanna admits that keeping Sarah gaining weight is an ongoing challenge.
While there have been health challenges in Sarah’s young life, the Makkais are bolstered by the support of family and friends. In the years since she was diagnosed, Team Sarah’s Strength has participated in the Walk to Make Cystic Fibrosis History each May, which is Cystic Fibrosis Awareness Month. The walk began in 2005 and is the largest fundraising event for Cystic Fibrosis Canada.
SELKIRK—Sarah Makkai is almost eight years old. She and her family are raising money and awareness for the Walk to Make Cystic Fibrosis History. Shown is Team Sarah’s Strength at the 2018 Walk to Make Cystic Fibrosis History.
—Submitted photos.
Due to the pandemic, the walk could not take place as an in-person event in 2020 so the Makkais created an encouraging video featuring short clips of family and friends walking on their own for CF to help raise awareness and funds. Deanna says they have been brainstorming for a creative idea to replace this year’s walk and continue to share the link to raise money for this important cause.
As the Makkais do their part to help find a cure, Deanna says, “It has been very exciting for us to see the progress being made and that wouldn’t be possible without the support of everyone in the community who helps support CF Canada and these fundraising events. It gives us a lot of hope for Sarah’s future but, unfortunately, our fight is not over. We won’t give up fighting for access to a cure or control for Cystic Fibrosis – for her and all of those affected!”
To learn more about Cystic Fibrosis or to join the virtual Walk to Make CF History, visit: cysticfibrosis.ca.
