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    Posted January 29, 2014 by
    Fredericton, New Brunswick
    This iReport is part of an assignment:
    Living with a rare disease?

    Peek at the Princess of Freddy Beach


    Peek at the Princess of Freddy Beach
    By Beth Craig and Lauren Craig

    The diagnosis of a rare disease as devastating as Metachromatic Leukodystrophy (MLD) that claims the life of a child over a prolonged period of time affects an entire community.

    After the initial shock of learning that their seven-year-old daughter, Hailey, had only three to five years to live, the Fitzgerald family was quick to channel all of their energy into making Hailey’s life as good as it possibly could be. Within a few short weeks, family, friends, and the expanded community had embarked on this shared goal to make Hailey’s dreams come true.

    There was such a powerful wave of emotion to help the Fitzgeralds that the story inspired the creation of two books. One, called Princess Pinch Me, is an illustrated children’s book told through the eyes of a fictional best friend of Hailey’s focusing on the dreams that were coming true as a means of coping with MLD. The other book, The Princess of Freddy Beach, addresses the factual behind-the-scenes account of the family’s experiences.

    These excerpts from The Princess of Freddy Beach tell the story of Hailey and her parents, Jason and Melanie, written by Jason’s cousin Lauren Craig and aunt Beth Craig.

    Lauren’s journey to learn about Hailey
    Hailey was going to lose the ability to walk. And then the ability to talk. The ability to control her own bowels. The ability to hear, the ability to see. Slowly but surely, everything would be taken from her, and then, only then, when her existence was whittled down to the emptiness of life without sensation, control, perception, or even thought, she would die. It could take years, and there was no cure.

    Sitting on the couch beside her, it’s my first time seeing her since the day I heard the news and I try to grasp the horror and enormity of the sentence this little girl I hardly know has been handed. It seems distinctly surreal to be in Fredericton, face to face with her and seeing it with my own eyes.

    But I’m here on a mission, and I clutch my notebook like a life-vest, hoping my intense, focused collection of information will keep my head above the dark waters of grief. My goal is to write down as much as I possibly can and interview as many people as possible during the brisk February weekend I’m able to be there.

    I push tentatively forward into the day, and set out to learn what I can.

    Leading to the diagnosis
    Early signs of MLD are often dismissed or misdiagnosed. Some signs just seem like misbehavior, and doctors don’t always connect them to other symptoms in the beginning. Towards the middle of the school year in grade one, Hailey’s teacher raised a number of issues that Jason and Melanie were already aware of to a certain extent. They had already been dealing with the issue of Hailey frequently pinching other children.

    The behavioral issues that Hailey seemed to be having were not unlike what any child goes through when they are pushing the limits of their boundaries with parents and teachers. It’s easy to write these things off as a normal part of growing up. But behavioral issues gradually evolved into physical issues, with her ability to write declining and her day-to-day complicated by failure to communicate the need to go to the bathroom. When Hailey’s parents did consult with their doctor, they heard explanations that appeased their worries. One early speculation was that Hailey’s vitamin B level was off – hardly a terrifying notion.

    “It’s what we wanted to hear,” said Melanie. There was, however, no progress towards improvement.

    By the end of July, Hailey was having a hard time swimming, to the point that she was no longer able to flip over in the pool with her lifejacket on. But it was the pronounced difficulty she was having when walking that caused the doctor to truly take notice and earnestly look for an answer.

    On the day that Jason and Melanie learned that Hailey had MLD and were told what this would mean for her, they drove to the school in the middle of the day and sat down with Hailey’s teacher, Mr. Tobin, and the administrator and told them both about the diagnosis. Then they took Hailey out of school early and went home.

    It was a huge emotional blow. That very evening every school employee, from the principal to the custodians, was summoned to an emergency staff meeting. The principal started to explain the news but, overwhelmed with emotion, was unable to say the words that confirmed everybody’s worst fears. Mr. Tobin stepped in and shared Hailey’s diagnosis with the staff.

    The plan was to ensure that Hailey had the most positive experience at school that she possibly could. Academics aside, for her to be emotionally and socially supported was of paramount importance. The goal was to create this positive atmosphere without disrupting the status quo or singling Hailey out.

    What happened next was highly unusual. Within less than a week of Hailey’s diagnosis, she was assigned an Educational Assistant (EA). This sort of speed in getting help in the classroom is almost unheard of—the process is normally rife with red tape and budgetary battles—but the school’s administrator directly sought out Marney, a woman fully accredited as a teacher and already friends with the Fitzgeralds, and approached her about taking a job as Hailey’s EA.

    In spite of fears that Hailey’s increasingly limited ability to function like a regular kid would hamper her social status, her classmates demonstrated an amazingly unified support of their friend. Hailey’s grade two classmates rallied around her with genuine empathy and natural understanding.

    Hailey herself maintained a sense of normality even as her life became progressively more difficult. There was not an ounce of self-pity in her, and she led the class by example, challenging herself constantly and refusing to let it slow her down or bring her down. Willful and witty, around her peers she was, like her parents, always smiling. Although it took a little longer to process the world around her, her mind was still clever enough to dish out or revel in humor.

    Celebrity Status
    Shortly after her diagnosis, the local newspaper received permission to release a front-page article about Hailey. The resulting outpouring of support set the tone for the amazing acts of kindness and generosity that were to come.

    In Fredericton, Hailey is a celebrity. “Oh, you’re Hailey,” crows a man outside the market, who overhears her name and scrambles to meet the famous little girl.

    Mr. Tobin seems awed as he describes how, almost six months after her diagnosis, the community has become so invested in and aware of MLD.

    The true inspiration, he says, is not Hailey’s story—it’s Jason and Melanie. He gestures at them, out at the market even though this means carting their daughter around in a “less-than-perfect” refurbished wheelchair and wiping drool and half-chewed samosa from her chin in the full sight of the public, refusing to let their lives be interrupted.

    People aren’t just compassionate because it’s a heart-wrenching story about a little girl with a horrible, rare disease—their support and love and respect are kindled by her parents, by their strength and honesty in the face of such an unthinkable misfortune. Jason and Melanie were already wonderful people, but the tragedy that forced them into the spotlight has only emphasized this—and highlighted their bravery. The community’s heart belongs to Hailey, but their respect and admiration belong to her parents.

    Hailey’s Dreams is a community outlet to give strength to the family and for 32 life dreams to come true. Of the many wishes that have been granted thus far, it is perhaps worth lingering on the small street in Fredericton that now bears the name Hailey’s Way, and remembering that Hailey’s way is not just a route along a journey but the smile worn through hardship and the clasp of supportive hands that come to mean so much when the path becomes rough and challenging.

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