Castle Rock

Event highlights hope, love for Castle Rock boy

Reece Rubino is battling spinal muscular atrophy

Posted 7/17/16

Reece Rubino was diagnosed with Type 1 spinal muscular atrophy when he was 3 months old. He wasn't supposed to live past 18 months. But now, at 10 years old, Rubino is beating all the odds.

“God has gifted me such a miracle to still have him …

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Castle Rock

Event highlights hope, love for Castle Rock boy

Reece Rubino is battling spinal muscular atrophy

Posted

Reece Rubino was diagnosed with Type 1 spinal muscular atrophy when he was 3 months old. He wasn't supposed to live past 18 months. But now, at 10 years old, Rubino is beating all the odds.

“God has gifted me such a miracle to still have him here for 10 years,” said Reece's mom, Lesa Rubino, while sitting in the kitchen of their Castle Rock home.

Reece became part of a clinical trial at the Stanford School of Medicine when he was 9 months old and the cost was overwhelming. That's when the Rubino family decided to reach out to their community by holding a 5k race and one-mile walk to help with their fight to keep Reece at home and in the care of the family. They created Reece's Roundup, and all funds from the race go into the Reece Rubino Fund.

When he was asked about the roundup and people in the community who have come to support him over the years, Reece said, “it's amazing.”

As Reece grows older, the cost of his care grows too. He needs more equipment and 24-hour in-sight care, which the family has hired nurses for.

“Avis has ben a godsend,” Lesa Rubino siad of one of Reece's favorite nurses, Avis Tegtmeyer, who has been caring for him for four years now. “She's uplifting. They sing together. She has brought joy to our family.”

But Tegtmeyer said it's Reece who brings the joy.

“I think that whoever comes into this home feels the love of the family and they fall in love with Reece,” she said. “I feel like I'm just doing what I'm supposed to be doing; have fun, play and care for Reece.”

The 11th annual Reece's Roundup will be July 30 at Butterfield Park in Castle Rock. This year, the Rubino family wants the event to be about hope, friendship and love.

“The funds that we raise are not our funds, God entrusts me with those funds to do the right thing for my son to give him the best quality of life,” Lesa Rubino said. “The roundup gives up hope, acceptance, and it's a tie for us to come together and thank the community too.”

In past years, the roundup has drawn close to 300 participants and many local business supporters, including Bob Lowry, of Lowry Allstate Insurance, who has purchased the event T-shirts for the past 10 years.

“I cannot state just how wonderful he is for his giving,” Lesa Rubino said. “I am so grateful.”

A larger sponsor of the event is Castle Rock Adventist Hospital.

“There's a lot of events in Castle Rock, bigger events as the town has gotten bigger, but I love supporting events that have been in the community for a long time,” said Christine Alexander, director of marketing for the hospital. “It's nice to be involved in a grassroots fundraiser for a real deserving family and boy.”

Reece is a student at Soaring Hawk Elementary and attends school through FaceTime in a live classroom. He also has a teacher who comes to his home. Reece loves learning and has recently tested in the 99th percentile in math. Next year, he will be taking an advanced math class.

“When it comes to Reece, our love for him is amazing,” Lesa Rubino said. “We don't count the cost and we never give up.”

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