Make-A-Wish grants young Tabernash boy smiles at Disney World

25 Nov

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Fear of hoping

Before summer 2011, Riley’s parents noticed their son having trouble with speech, he appeared clumsy in certain aspects and his eyes were not tracking properly. On July 9, Riley’s parents received the devastating news no parent would ever want to hear.

Riley’s symptoms were from a type of tumor called DIPG, located in the middle of his brain stem. The tumor is deemed inoperable because it is located in the part of the brain that controls involuntary motor skills like heart rate, breathing, and swallowing.

Originally, doctor’s gave Riley about a year to live. He underwent short but intensive radiation treatment to help shrink the tumor and lessen the symptoms to provide “a quality of life for an indeterminate amount of time,” said the family’s close friend Marty Ferguson of Tabernash, on behalf of the family.

Parents had told Riley: “We’re going to super-secret Ninja doctors to help cure (you),” Ferguson said.

The “Ninja doctors” did help Riley. “Right now, you would never know he’s sick,” Ferguson said on Monday. “He’s a normal little boy.”

But the Deggingers live in fear that symptoms could return.

On her CaringBridge.com journal, Mary Ann wrote: “There is always the dark shadow of ‘what if’s’ hanging over us. Every time he trips or chokes on his dinner we hold our breath. Is this the beginning of the end or is this just a normal 4-year-old being clumsy and drinking his milk too fast?

“All I could do is cry as I tucked him into bed last night,” she continued. “Had I grown complacent and lost the urgency that every day counts? Is it worse to live without hope or to have the audacity to hope and have it taken away?”

Although the family gave permission to have Riley’s story told, the family remains careful about what their son knows about his cancer.

“The family would like to control the message Riley hears,” Ferguson said. Of Riley’s prognosis, the family is willing to share as much as needed in due time, but for now, “I don’t know if they’ve had that conversation with Riley.”

In the meantime, the family is working toward finding a natural rhythm to their lives, all the while making sure each day is special for Riley. The recent Disney World trip, a recent trip to the circus, a CSU football game this year where he met the team and mascot, and perhaps a beach vacation to see the ocean are all part of that quest.

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Granting a wish

It was with the compassion of three Middle Park High School seniors, the Make-A-Wish journey became a reality.

Sabina Ligas, Dovile Klisauskaite and Haley Nordin chose a fundraising campaign in the name of Riley as their civics class project this year. Assigned by teacher Jack Dugwyler, the project was intended to help students “get involved in community,” the teens said.

It was Klisauskaite who first thought of Make-A-Wish, and through the national organization she discovered there was a young recipient in Grand County.

From there, the girls shifted into high gear, launching a school campaign to raise the funds. They sold bracelets with Riley’s name on them to classmates during lunch hours and free times, they sold paper stars on which students wrote messages to Riley, and they put coin jars in classrooms with a competition attached where grades battle for the most money raised.

To date, the seniors have earned close to $2,000 and plan to continue their fundraising efforts into the first week of December.

“We wanted to make this the best year of (Riley’s) life, and we really wanted to take part in that,” Klisauskaite said.

“He’s the all American boy,” Ferguson said. “He’s smart, good looking, great parents, athletic, lives at the YMCA, great upbringing … and then this comes along.

“It’s totally heart-breaking.”

Tonya Bina can be reached at 970-887-3334 ext. 19603

 

http://www.skyhidailynews.com/article/20111123/NEWS/111129983/1079&ParentProfile=1067

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