Fifteen-year-old Hailey Sigurdson fulfilled a long-time dream in July, a dream realized thanks to the help of The Dream Factory, her NCI peers, and the community at large. In mid-July, Sigurdson and her family indulged in the sights, sounds, and experiences of Prince Edward Island.
“I first started wanting to go there in Grade Four because I did a project on it,” says Hailey.
What she didn’t know at the time was that a life-threatening illness would pave the way to achieving that dream.
In 2015, Sigurdson was diagnosed with Marfan Syndrome (MFS), a degenerative disorder of the connective tissues in her body. MFS affects one in 5,000 people if it’s genetically transferred to the child from a parent. Sigurdson’s MFS was a spontaneous mutation, which is said to occur in only one of 20,000 people. Her parents and sibling have since been tested and are free of the MFS gene.
“[Hailey’s doctor] sent her for testing to the geneticist because she has the outward symptoms of Marfan Syndrome,” says her mom, Colleen. “They sent us to a heart specialist right away and they [discovered that] her aorta is dilated a little bit, and so they put her on heart medications to try to prevent it from getting bigger. Her aorta will slowly dilate over time, which makes it weaker.”
While it’s primarily her aorta, the largest artery in the body, and heart complications that put her at the greatest risk, MFS can also negatively affect the lungs, eyes, bones, and joints—virtually anywhere connective tissue can be found.
Symptoms of MFS typically become more evident in the teen years as the child’s body develops. Sigurdson had already been diagnosed with scoliosis at 12 years of age, a condition that is often the first indicator of the disorder. Since that time, doctors have discovered a 40 percent reduction in her lung function and a weakening of her aortic wall.
While there is evidence that the disorder can be managed if treated early, MFS patients need to avoid strenuous activities, falling, and hard bumps to the body.
“It changed how she is with her dad and her brother,” Colleen says. “They used to wrestle and I had to [remind them to stop]. Her dad had to learn to be [less rough and tumble] with her.”
Hailey says that she’s had to give up soccer and basketball, sports that she loved, because she tires quickly from any activity she’s involved in. Colleen adds that, due to the rarity of the disorder, it has felt very lonely at times. Clinic appointments have become a regular part of the family’s life, with Hailey seeing as many as eight specialists at any given time and having up to five appointments in a day.
“She’s been amazing,” Colleen admits. “When she was first diagnosed, we took a few days to just be miserable and then she said, ‘Okay, I’ve got to change this thing around and do something.’ So she threw herself into her art. She wasted no time with feeling sorry for yourself.”
Colleen also wasted no time in reaching out to The Dream Factory, a Winnipeg-based charitable organization dedicated to fulfilling dreams for kids who are battling life-threatening illnesses.
“We’re unique because we’re based in Manitoba and all of the funds we raise stay in the province to help local children,” says Howard Koks, Executive Director of The Dream Factory. “Everything we do is focused on helping sick kids and their families. The Dream Factory relies solely on the generous support of people and businesses. Since 1983, we’ve created cherished memories for more than 700 families in Manitoba.”
As fate would have it, NCI student president Giuppi D’Amico reached out to The Dream Factory a few years later, requesting an opportunity to get involved. He was unaware at the time of the need within his own school. The Dream Factory put the two in contact, to ensure that Hailey was agreeable to the school’s involvement. From there, D’Amico and his co-president, Kenzie McGarry, were given the green light to start fundraising.
“I thought that [sponsoring an NCI student] would be a better motivator and pull everyone together,” D’Amico says. “We set our goal and we reached it.”
The pair set to work rallying the school behind the cause. Cash donations were collected from many students. Others brought baked goods to support the school-wide bake sale. Going one step further, the presidents decided to take it to the larger community, hosting a bingo night and a barbecue.
D’Amico says the response from local businesses was incredible. Many businesses donated prizes for a variety of raffles. Wiens Furniture offered their location for the community barbecue and supported it with door prizes and advertising. Bigway Foods donated the food.
In the end, the students exceeded their goal of raising half the money required to fulfill Hailey’s dream. A cheque was then sent to The Dream Factory on her behalf for $5,300.
“The [Dream Factory] said that anything helped,” says D’Amico. “We could have given them $500 and they would have been happy, but Hailey’s dream cost around $10,000, so to raise just over half was a big help for them. They were very touched when I first called to say we wanted to help. They usually don’t get schools asking.”
“Giuppi and the NCI students set their own goal and ran their own campaign,” Koks says. “In our experience, we’ve found that a committed group of volunteers, regardless of age or circumstance, can do tremendous things, so we are very proud that they were able to raise so much to help our organization. At The Dream Factory we’ve learned to never underestimate the power of the human spirit, especially in young people.”
Throughout the fundraising efforts, Hailey says the students and staff were very mindful and sensitive, preventing her from feeling awkward or the centre of unwanted attention.
“I wanted them to know, just to raise awareness because it’s not really well-known, but I didn’t want [the spotlight] entirely on me,” Hailey says of her generally timid nature.
The balance of the funds required to fulfill Hailey’s dream trip came from outside donations to The Dream Factory, one of them from a couple who requested only a picture of the family having fun in PEI.
Apart from the joy of fulfilling her dream, Hailey will continue to pour herself into her artistic skills of painting, drawing, and writing.
D’Amico and McGarry graduated this year. D’Amico was accepted to the University of Winnipeg where he’ll be pursuing a career in education.
“I used to be a really shy person up until Grade Ten,” D’Amico says. “Then in Grade Eleven I decided that I wanted to make connections and enjoy high school. I really liked it that I could be school president in Grade Twelve. I figure I can become a teacher and continue this.”
And The Dream Factory staff hope to encourage D’Amico to continue in his passion for helping people.
“Giuppi is a fine young man who represents the spirit of what The Dream Factory is all about,” Koks says. “We hope to keep him involved with the organization as he moves on to university as he is exactly the type of energetic and community-minded person we love to have involved. We will work with him to find future volunteer opportunities going forward.”
