Arieal Haileybury, ON
Arieal is an outgoing and happy nine-year-old girl. “She will not walk past someone without making them say hello back to her. Arieal lights up everyone’s day and can bring smiles to anyone she meets with her non-stop singing and love for music,” says Arieal’s mom, Selena.
Arieal has been travelling from her home in Haileybury, ON to Toronto’s SickKids Hospital since she was only a month old, when she was referred by a specialist in North Bay. “Arieal had a heart murmur and it was not improving or correcting itself with time," says Selena. "She needed to be seen by a specialist. Arieal also did not gain weight at a normal rate for a newborn baby and was not meeting milestones for her age.”
The doctors at SickKids treated Arieal for several months without a diagnosis. Selena and Arieal drove all night through a snowstorm to get to the Christmas Eve appointment where they were finally given an answer – Williams Syndrome, a rare genetic disorder caused by a deletion in chromosome 7.
Williams Syndrome can affect numerous aspects of a person’s health. “In Arieal’s case, she has had two open-heart surgeries and many catheterization procedures over the past nine years to assist in keeping her arteries functioning. She has high blood pressure and she has been medicated for this since she was nine months old. She has recently developed renal artery stenosis of the left kidney which is a possibility as an individual with Williams Syndrome gets older. Arieal also has a lot of anxiety and developmental delays that make things a challenge for her and for me, as her mom, to manage,” says Selena.
Selena and Arieal would drive six hours each way from Haileybury to Toronto to see her specialists. But Selena found the trips exhausting and the car rides were stressful for Arieal.
"I figured if I can reduce my stress level and rushing due to traffic, detours, weather, and whatever else may occur on our trips, I can reduce anxiety and stress for Arieal before her appointments occur."
Selena had heard of Hope Air several years ago, but didn’t look in to applying for a flight until she saw a friend’s Facebook post. “I saw a friend on Facebook comment on a family that had used Hope Air for their child’s appointments. They travelled down and back the same day and I had to find out if Arieal would qualify to do this too. I figured if I can reduce my stress level and rushing due to traffic, detours, weather, and whatever else may occur on our trips, I can reduce anxiety and stress for Arieal before her appointments occur.”
Since then, Arieal and Selena have flown with Hope Air to Toronto, saving time and reducing worry so that Arieal and Selena can concentrate on her appointments. “It has been very helpful and a relief for both of us,” Selena says. “Travelling with Hope Air has lifted a burden off my shoulders when it comes to thinking about Arieal’s medical appointments.”
On one flight, Arieal and Selena travelled in a private plane with Hope Air volunteer pilot John Brown. “It was amazing. Arieal loved having the headphones to listen to the pilot. He was great in entertaining her during the flight,” says Selena.
Arieal will need to visit SickKids regularly until she becomes an adult, but Selena is proud of her daughter’s determination. “The treatments have helped her a lot. She was not meant to live past the age of two. She has fought very long and hard to come back from a surgery and a catheterization procedure that had very low survival expectations. She is a fighter and she is still here today because of that.”