Reece's roundup enters third year

When Lesa and Jeff Rubino received word their son would not likely live past the age of 2, the doctor delivered the message with tears in his eyes.

By Story by Rhonda Moore; photos by Courtney Kuhlen
Posted 6/26/08

When Lesa and Jeff Rubino received word their son would not likely live past the age of 2, the doctor delivered the message with tears in his eyes. …

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Reece's roundup enters third year

When Lesa and Jeff Rubino received word their son would not likely live past the age of 2, the doctor delivered the message with tears in his eyes.

Posted

When Lesa and Jeff Rubino received word their son would not likely live past the age of 2, the doctor delivered the message with tears in his eyes.

Today, at the age of 2 years, 8 months, Reece Rubino has exceeded medical expectations in a miracle the family hopes lasts well into the coming years.

Reece was born with spinal muscular atrophy, a hereditary disease that causes weakness and wasting of the voluntary muscles in the limbs of infants and children, according to the National Institutes of Health National Institute of Neurological Disorders and Stroke.

The disease strikes about one in 6,000 babies born in the United States each year and about one in 40 people are genetic carriers. The Rubinos, who live in Castle Rock, did not discover they are carriers until the birth of their third child.

"In our whole entire family, Reece is first we knew we had the gene," said Lesa Rubino. "You could be a carrier but if you marry or have a child with a noncarrier you won't know that it runs in the family."

Lesa Rubino felt something was different about her baby from the time she suffered a difficult pregnancy and delivery. Despite her concerns about his progress, doctors did not diagnose spinal muscular atrophy until Reece's two-month checkup, when the doctor noticed abnormal weakness in his muscles.

Muscle weakness is common in babies who have spinal muscular atrophy, and typically cannot control their heads or necks, are unable to crawl or walk and have difficulty swallowing and coughing. The respiratory challenges proved the greatest danger to Reece, who requires constant care to avoid lung and respiratory problems, Lesa Rubino said.

Despite the dark diagnosis, the Rubinos approached Reece's condition with a combination of faith and fortitude that has kept Reece alive beyond doctors' expectations. Lesa Rubino dedicates 24 hours a day, seven days a week to the constant care of her infant son.

"He's my son. There was no other option - I had to do something," she said. "I knew the outcome if I didn't do anything. So what was it going to hurt if I did something to try to prolong his life?"

Lesa Rubino was an elementary school health assistant at the time of Reece's diagnosis and obtained her license to be a certified nursing assistant last August so she could be licensed as Reece's in-home provider.

The commitment is a worthwhile trade-off for the entire family, Lesa Rubino said. The investment seems to be paying dividends as Reece approaches his third birthday with hope of beginning preschool this fall.

"We could have a nurse come in 24 hours a day, but I want to take care of him," she said. "We're on top of him every minute. We can't leave him for a second. If he is not in my line of sight or within reach, I might not be able to get to him soon enough if he has respiratory issues."

Reece qualified in the fall of 2006 for a clinical trial at Stanford University in California, which requires near-constant travel for the family. Since his experimental treatments began, Reece has shown some improvements and the family continues to travel for treatment despite the fact that funding from the Muscular Dystrophy Association expired after the first 18 months.

As he approaches his third birthday, Reece still cannot sit, stand, walk or roll over and most of his nourishment comes from a feeding tube. However, he is able to hold a ball, turn his head, lift his arm, swallow pureed foods and breathe on his own up to 12 hours a day. The Rubinos regard these small steps as major milestones for their baby boy.

Jeff Rubino is quick to look to his wife as the family's "hero" while Lesa Rubino insists she could not meet the family's needs without her "supportive" spouse. They have been able to juggle the demands of Reece's travel and care with the help of a community of friends and fellow members of their Castle Rock church.

The couple's two children, Genna, 17 and JP, 12, round out the family of five, which today travels in a pack for Reece's ongoing treatments.

"We know there are children in the study who did pass on," Jeff Rubino said. "We know it's not a cure but stops the … progression of the disease to a point.

"There's no doubt there are points of frustration [for Genna and JP] but a lot less than the outpouring of affection and love for him," Jeff said.

The family is preparing to host its third annual Reece's Roundup, a 5K run and one-mile "walk, run or roll" to help raise money to meet the cost of Reece's treatment and care. The list of financial demands continues to grow as the Rubinos assume the full burden of Reece's clinical treatment at Stanford University, which is no longer covered by the case study and not yet approved by the federal Food and Drug Administration.

The Rubinos are braced to install the equipment necessary to provide Reece an education, as well as make home improvements to enable them to use his wheelchair, which was provided by insurance.

Insurance will not cover handicap-accessible upgrades to the house, however, with bids from local contractors inching upwards of $20,000.

The parents of three also hope to provide some normalcy for their family, which faces trials that far exceed the normal teenage difficulties. Lesa dreams of being able to afford respite care to help with some of the normal day-to-day demands of running a five-person household and family therapy as they learn to cope with the demands of Reece's disability.

Until now, they have relied on the grace of a community that has so far supported them through the first, but not the final years. In 2007, Reece's Roundup raised about $13,000.

"My belief is god is going to give us what we need," Lesa Rubino said. "The community is giving us strength in their prayers, you can't put a price on that. Without the financial support, we wouldn't have the means to keep our son with us."

Reece's Roundup is July 25 at Butterfield Park in the Meadows subdivision in Castle Rock. Check-in begins at 7 a.m., the 5K run begins at 8 a.m. and the one-mile walk, run or roll begins at 9 a.m.

Entry fees range from $25 and $30 for an individual to either walk or run, to $75 and $90 for a family or team of four. Corporate sponsorships are available at the bronze, silver and gold levels. All proceeds benefit the Reece Rubino Benefit Fund.

Register by July 1 to reserve a T-shirt in the correct size. Registration forms are available online at www.rubinofamily.net. For more information contact Maggie Masters at 303-907-6597.

303-663-7162 |rmoore@ccnewspapers.com

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