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    CELEBRATING BUFFALO TOGETHER
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    CELEBRATING BUFFALO TOGETHER
    #TOTALLY BUFFALO

 

Town of Arcade gets ready for Winterfest as they turn the town PURPLE for 10-year-old Alex Heldwein

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The 49th annual Arcade, N.Y. Winterfest is happening this weekend.

You’ll find a ‘Braving The Elements 5K with runners wearing their favorite Halloween running gear, a spooky ‘Winterfest Train Ride’ at the Arcade and Attica Railway, a craft show, baseball game, snow sculpting contest and a ‘Frightfest Winterfest Party’ with a Halloween costume contest.

And although the Halloween theme might bring plenty of orange – you can bet your bottom dollar there’ll be plenty of purple, too.

This year – the entire community of Arcade is coming together for one of their own – a little superhero named Alex Heldwein. The 10-year-old suffers from Hunter Syndrome. Hunter Syndrome is a rare condition affecting 1 in 100,000 to 170,000 people, and there is no cure. Purple is the color for Hunter Syndrome Awareness.

The Pioneer Central School District is also showing their support. They held a dress-down for donation day this week. Students, teachers and staff members wore purple to support Alex and his family. The girls’ modified basketball team wore purple capes and socks for their home game earlier this week. (Photo: Zimmer Footwear, Facebook)

I received an email from a community member who didn’t want her name used – but told me all about this special boy and this special community. Alex had a tough go over Christmas and was hospitalized. He’s out of the hospital and back at school – but it’s not easy. His body temperature has to be constantly managed through heated sweatshirts, heated blankets, chairs – even a heated mattress.  All that costs money. The community is pulling together to help spread the word about Hunter Syndrome, help raise money and to show this family they are not alone.

“But, Mary, this year our Community is surrounding Alex and his family to support them both emotionally and financially. As you well know, children who suffer from such devastating diseases like this have really huge financial needs. He was in the hospital over Christmas and we heard he might not be able to come home because he needed expensive equipment,” the email noted, “Surprisingly, that little guy rallied and walked back into school recently. The Community is coming together and we are turning the town purple in many ways to raise funds for him. Many people are buying purple capes that are being made locally by volunteers that can be purchased for $5.00 to wear during the event and the profit is going to his family. Many of the 5k runners will be sporting them.”

You still have time to register for the race – CLICK HERE FOR INFO. You will also find other Winterfest information there as well.

You can find purple capes at Zimmer Footwear. Get yours today before they are gone.

By the way, Alex lives along the race route and will be watching out his window this Saturday. Imagine how much love he will feel as he looks down at that sea of purple – knowing it’s all for him.

 

 

Photo Credit: Greg Clinch Photography

 

 

 

Mary Friona

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Mary Friona

Following my heart with my husband and four daughters. An Emmy Award winning journalist lucky enough to work in television & radio for 20 years - seeing wonderful places, meeting great people and telling their stories.

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