December 14, 2018

BY DEEANNA ROLLINS

Eight years ago, if you typed “CF” into the Google search bar, cystic fibrosis wouldn’t be the first thing to come up. Fortunately, things have changed.

Summer Fryers, 8, was diagnosed with cystic fibrosis shortly after she was born when her family got back the results of her Guthrie test (the neonatal heel prick they do on newborns). She has lived a life full of medication, vitamins and respiratory therapy ever since.

“It was scary,” said Stephanie Fryers, Summer’s aunt. “None of us really knew anything about cystic fibrosis. We had to Google everything and we relied on our doctors a lot.”
Summer has become accustomed to things like taking enzymes before every meal, taking extra Flintstones vitamins in the morning and before bed and getting her “beats” (respiratory therapy) with a nebulizer full of Pulmicort and salbutamol, both medications that help clear her lungs of mucus and phlegm.

Although Summer may have to do all of these things, she still gets to do regular eight-year-old girl things. Like have sleepovers and go to balls. Specifically, The Princess Ball in support of cystic fibrosis.

Tickets for the ball were $50, which included dinner and dancing. They also had a flower garden made with flower suckers that people could buy for anywhere from $5-$10 in order to win a prize. The fee of the Disney princesses was paid by a donor, as was the DJ and the ballroom at Golf’s Steak House & Seafood in Kitchener. All of the proceeds went to the KW chapter of Cystic Fibrosis Canada.

“I’m excited for the ball,” said Summer. “I just got my fingernails and toes done and they match my dress!”

On Jan. 29, Summer woke up and took her vitamins, did her beats and then got ready for the ball, dressing up in a beautiful red dress. She was accompanied by her best friend and cousin Madden Fryers.

It was an afternoon where Summer could just be a little girl. She got to do crafts, paint her nails, make Valentine’s cards and meet real-life Disney princesses. She still took her enzymes before her lunch; a lunch that was made specifically for little princesses with CF.

One of the major complications of cystic fibrosis is the inability to digest fats and proteins, meaning that people with CF need to eat food that has high fat content. Another is the inability to absorb nutrients, causing (in some cases) malnutrition. These things mean that a meal made for a CF princess is one full of foods like French fries, chicken fingers, pizza and mac and cheese.

These are all things that Summer doesn’t enjoy all that much, which makes it really difficult for her to get the 4,000 calories a day she has to consume to keep her at a healthy weight.

“The hardest part is getting that food into her. We have to look for food that’s higher in fat and higher in calories,” said Stephanie. “… She’s not like any other normal kid, she doesn’t like the greasy, fatty foods. She like fruits and vegetables, food that doesn’t have a high fat content.”

Summer is the only one of her three siblings who has CF. According to statistics, there is a 25 per cent chance that a baby will be born with cystic fibrosis, if both biological parents have the defective gene. There is also a 25 per cent chance that the baby won’t have CF and a 50 per cent chance that the baby will be a carrier of the defective gene.

For more information on cystic fibrosis, visit www.cysticfibrosis.ca.

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