Friday, 7 June 2013

Helping Fulfill Hailey’s Dreams

Originally published on Couch Assassin.

Hailey Fitzgerald is a funny, strong-willed girl. She is 8 years old and lives in Fredericton, NB with her parents and her little brother Chase. Hailey likes to play soccer and read, but she is unable to do either of those things on her own anymore.

Hailey suffers from Metachromatic Leukodystrophy, a rare degenerative, terminal disease that has no cure. Hailey’s gross and fine motor skills, along with her cognitive skills, are lessening every day. Hailey has endured many physical changes. She can no longer walk at all. She is in a wheelchair or she sits in a chair all day. Her speech has been significantly impaired; she speaks very slowly, and slurs her words a lot. Although she still does some activities, like gymnastics and swimming, her parents are much more hands on as she requires constant assistance.

Becky Fitzgerald, Hailey's aunt, explained that there have been a lot of changes since Hailey’s diagnosis in the summer of 2012. "There has also been a big emotional adjustment for everyone," said Fitzgerald. "We haven't given up on a possible cure, but facing the fact that Hailey may die in the next 2-4 years is very hard."

Fitzgerald and her fiancé founded Hailey's Dreams in the fall of 2012. The foundation has been set up to help Hailey achieve and experience everything she can dream of while she still has time. The funds raised so far have helped the family tremendously to assist Hailey. Hailey’s mother was able to take two days off per week for the entire summer in order to spend more time at home with Hailey. The family was also able to fix their deck to make it more accessible for Hailey, and they are planning to purchase a wheelchair-accessible van this summer.

On Saturday, Irene's Pub will be hosting a special benefit show for Hailey's Dreams. The show will feature Brendan Flynn & the Terrible Liars. The drummer of the group, Phil Evans, is Fitzgerald's fiancé and Hailey's soon-to-be uncle. Evans also co-founded Hailey's Dreams with Fitzgerald.

Matt Corbiere is another member of the Terrible Liars. He also plays for Winchester Warm, another band on the bill. When Becky proposed the idea of a benefit show, the group jumped on the opportunity. "Hailey's condition has deteriorated quite rapidly, and we were keen to put together our own event, and help out as best we could," said Corbiere. "Her story is very sad, but hopefully more awareness of such rare genetic issues will help lead to greater research in the area, treatments, and even a cure someday."

So far, Hailey has been able to fulfil a few of her dreams, including taking a vacation to the Florida Keys, attending a Carly Rae Jepsen and Justin Bieber concert in Ottawa, participating in a scavenger hunt, swimming with the dolphins and getting a puppy, among others.

Another one of Hailey's dreams was to get a street named after her. The mayor of Fredericton and a local developer had a street in Fredericton renamed 'Hailey's Way'. There was an official ceremony at City Hall where the sign was presented to Hailey by the mayor. According to Hailey's aunt, it was a really special moment for everyone involved.

Fundraising events have been held for Hailey in Fredericton, Halifax, and Ottawa, with one in Toronto planned for the fall. Most of the events are organized by family members or family friends. The foundation held a big fundraising gala in Fredericton that raised over $16,000. Other fundraising events have been organized, including a university hockey game, bake sales and bottle drives, each raising between $500-$4,000. In addition, the Dairy Queen in Fredericton had a Blizzard of the Month called Hailey's Dream Blizzard, and they raised over $10,000.

Want to help Hailey fulfill her dreams? Stop by Irene's Pub on Saturday and check out some great local music. For more information or to donate, check out the Hailey's Dreams Foundation website.

Hailey's Dreams Benefit Show @ Irene's Pub
Saturday, June 8, 2013 @ 9:00pm

Brendan Flynn & the Terrible Liars,
Winchester Warm
Kelly Sloan

No comments:

Post a Comment