Disease can’t kill girl’s dreams | VailDaily.com

Disease can’t kill girl’s dreams

Last Saturday evening the fire trucks at Vail Fire Station Two were pulled out of the bays. It was a nice night so the doors stayed open. Inside a small gathering of people, mostly Vail firefighters and their families, ate Moe’s BBQ and spoke quietly.

Also in attendance was a family of four who had made their way up to Vail from Grand Junction and who would later that night make their way back home.

Melanie and Tony Matarozzo, along with their two daughters Dakotah and Mackenzie, had come to the Vail firehouse for the second year in a row. The Matarozzos are the picture of a Western Slope country family. Arriving at the firehouse right on time, each stepped out of their huge Ford farm truck wearing Wrangler jeans and boots. Tony had on a cowboy hat for good measure. They are soft spoken, kind-hearted and genuine. The love they have for one another is so obvious and outward it makes you want to rush off and call your mom.

The Matarozzos’ visit to the Vail firehouse that evening was relaxed and easygoing. They told stories and the firefighters listened. There were stories about the farm, the chickens, the cats and the dog. Dakotah told the firemen about her new horse and Mackenzie about the long hair she was growing to solidify her already undeniable princess status. She called it her “Rapunzel” hair. Tony and Melanie were mostly quiet, watching as the girls became more comfortable with the firemen.

When Mackenzie began to tell one of the firefighters of her dream to ice skate, a tear developed in Melanie Matarozzo’s eye. Despite her tremendous strength as a mother, Melanie could not hold back that one tear. It was a small tear, kept that way no doubt through tremendous resolve, though I am sure somewhere within her and perhaps later, somewhere private, she wept. She knew that her resolve, the same resolve that keeps the tears back was also inside of her daughter Mackenzie and she knew that her daughter would need every ounce of it.

Within Mackenzie Matarozzo, alongside her hopes and her dreams, right there with the ponies and the princesses was something else. Something that tested her strength and her will. The Matarozzos are a giving family, but it is the one thing they can’t take away that is their greatest burden, their greatest fear and the reason for their visit to the firehouse.

Their daughter, 6-year-old Mackenzie, so full of life and hope and ambition, so perfect in so many ways, was given the one thing that none of them wanted but that anyone of them would gladly take from her if they could. Little Mackenzie has muscular dystrophy.

Mackenzie Matarozzo was diagnosed with a very rare and not so very favorable form of Limb-Girdle Muscular Dystrophy (LGMD) when she was 3 years old. Her disease, like most forms of muscular dystrophy, causes the muscles of the body to grow weaker over time. First affecting the areas around the shoulders and pelvis, LGMD eventually progresses to the cardiovascular system compromising heart and lung function, making life difficult and dreams like ice skating impossible.

Yet, little Mackenzie has not lost hope. She can see the tears in her mother’s eyes. She is a smart girl and knows the road she faces. Yet she faces it still. She blames no one. Instead she tells stories about someday riding horses without her dad’s help, and about ice skating. She continues to grow out her hair and wait for the day when she may let it out from the stairless tower that is LGMD and allow the prince waiting below to climb up and cure her.

Mackenzie and the many others like her rely on the funds generated through organizations like the Muscular Dystrophy Association (MDA) for the hope they need to continue to dream. MDA provides opportunity for children with muscular dystrophy to enjoy life through their many camps and events. In addition, they provide support to families and are instrumental in funding the research necessary for a cure.

Please support your local firefighters and their “fill the boot for MDA” campaign this summer. With your help maybe one day Melanie Matarozzo’s eyes will flow tears of joy as she watches Mackenzie take her first ice skating lesson.

Ryan Sutter of Avon writes a biweekly column for the Vail Daily. He can be reached at ryan@solorganics.com.

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