Hailey’s parents speak with Fredericton paper The Daily Gleaner

Laverne Stewart of the Daily Gleaner spoke to Hailey’s parents, Jason and Melanie, about Hailey’s condition and their initial reaction to hearing the news. Click through to read the article.

Dying child’s parents making most of time left

By Laverne Stewart
03 Oct 2012 08:14 am

Hailey Fitzgerald’s parents are doing everything they can to make each day the best it can be for their little girl.

This seven-year-old, who loves dressing up, playing soccer and reading, was recently diagnosed with juvenile metachromatic leukodystrophy (MLD). It’s a rare genetic condition that affec

ts the white matter of the brain. The disease is incurable and fatal.Jason and Melanie Fitzgerald noticed small behavioural issues with their daughter last February. By May she was having trouble running. Now, her dad said, Hailey walks slower and her legs are turned in making her unsteady on her feet.

In June, Fitzgerald said he and his wife thought there was something seriously wrong. Medical tests were done. They received the nightmarish news from their daughter’s pediatrician on Sept. 14.

“It’s the worst thing, as a parent, you can ever hear. We knew there was something wrong but we thought it would be something manageable. We never expected it would be something like this. We were both crying. I’m sure I cried more that day than I have in the past 20 years.”

Hailey’s condition will gradually worsen, leading to paralysis, blindness, seizures and dementia. She is expected to live with MLD for another three to five years. In the time their daughter has left, he said, their goal is to fill each day with experiences that will make her happy.

These are still really good days for Hailey and they are making the most of them. Recently she enjoyed a sleepover party at the Fredericton Inn with eight of her friends.

“There was a pizza and swimming party. They put together an amazing night for those kids. It was terrific,” he said.

Next week she will travel for a dream Disney vacation through the Children’s Wish Foundation. As soon as the foundation learned of her disease it put a rush on to make her wish come true so she could enjoy this trip while there was still time, he said.

The family will travel to Florida Oct. 10 for the week-long vacation.

“She wants to meet Ariel from The Little Mermaid. That’s her favourite princess. She is also getting a makeover and going to dinner with Cinderella. She’s pretty excited about that.”

In the not-too-distant future, he said, he and his wife know they will see their daughter slip away mentally and physically. Until that time comes, he said, they are determined to spend all of their time doing whatever their daughter wants.

She wants a puppy. A golden retriever, named Hailey’s Comet, will arrive at their home as soon as they return from Florida, he said.

Hailey goes to school and loves it. She will continue to be in class for as long as it is safe for her to be there, he said.

The family is grateful for the support of family, friends and people they don’t even know.

The Fitzgeralds have a three-year-old son named Chase who is also being tested for the disease. Doctors have told the family Chase has a one-in-four chance of having MLD, too.

“They have already done blood work. We should know in a couple of weeks,” he said.

Fitzgerald tries to remain upbeat for his daughter, son and wife but there are days it’s too much to bear. He and his wife are taking each day as it comes as they try to make Hailey’s life wonderful.

“I say to people maximize each day with your kids and count your blessings.”

Hailey’s aunt, Becky Fitzgerald, is especially close to her niece. She started a website and Facebook page called Hailey’s Dreams. It is meant to enrich the time Hailey has left with happiness and great memories.

Through it people can make donations to help her to participate in the activities she loves while she remains physically able. The funds will also be used to help pay for the care she will require in the declining years of her life.

Hailey’s Dreams, a not-for-profit organization, is also working to raise awareness about her disease and gather funds for her care and for medical research.

For more information please go to www.haileysdreams.org or email info@haileysdreams.org.

Filed under: Press
October 7, 2012 at 2:33 pm
Posted by: Admin