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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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
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
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
"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
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
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
"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 will not cover handicap-accessible upgrades to the
house, however, with bids from local contractors inching upwards of
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
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
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