‘More than a fundraiser’
November 13, 2010
ASPEN – A mid-December trip to India is far from a holiday getaway – but it has the potential to give a great gift to Cash, a 5-year-old Aspen native.
“Cash is just Cash to us – we know he is different, but we also know he is filled with potential; we see it every day and in every little milestone,” said his mother, Stephanie Krolick. “But it’s hard, because nobody can tell us exactly what to expect.”
Cash was born with a unique, unnamed chromosomal disorder for which there is no known cure. It affects him both physically – at the age when most little boys are running around the playground, Cash can take only a few unassisted steps – and developmentally – Cash cannot speak and has been diagnosed with autism.
In just a few short weeks, though, things might change for Cash and his parents as they head to Dr. Geeta Schroff’s clinic in New Dehli for two months of stem-cell therapy; a fundraising benefit Sunday will help offset the costs of the trip and treatments.
“But it’s more than a fundraiser,” said Krolick. “This is a celebration of Cash and of our decision.”
Indeed, the decision to bring their child halfway across the world for what many consider a controversial medical procedure was not easy for Krolick and Cash’s father, Josh Burnaman. But both have learned to accept Cash’s disabilities, and they want to see his quality of life improved.
“This isn’t about fixing Cash; he doesn’t need to be fixed,” said Krolick, sitting on the floor at the Cottage Preschool next to a clearly engaged Cash, who attends school five half-days a week. He also receives weekly physical and occupational therapy at Aspen Valley Hospital, as well as speech therapy and equine therapy. “This is about quality of life … think about how people would treat you if you were wearing diapers; think about not being able to communicate, walk, be the person you want to be. This is about Cash’s future.”
“This seems to be a critical time for Cash,” added Burnaman. “You can just see where a little nudge could really set him in motion.”
Krolick and Burnaman are taking their cue from locals Amanda Boxtel and Lea Potts, both paralyzed and both stem-cell patients who have seen positive results from the therapy through Dr. Schroff’s clinic.
So for Cash, who is not paralyzed but suffers from low muscle tone, also known as hypotonia, the hope is improved muscle tone and, ultimately, the ability to walk on his own.
According to Krolick, a first step toward many of life’s milestones – the ability to walk, communicate with sign language and speech, and potty-train – is core stability, which will only come through improved muscle tone.
She and Burnaman believe by giving Cash the chance to improve his core strength through the stem-cell therapy, they are giving him the chance of a better future.
But Krolick and Burnaman, who have seen more doctors and wrestled with more potentially life-altering decisions in Cash’s five years than most families will face in a lifetime, are realistic in their expectations for Cash.
“We have always waited for Cash to tell us who he is, and he has,” said Krolick, beaming with deep admiration for the dark-haired, bright-eyed boy sitting in her lap, enthusiastically mimicking signs and clearly wanting to communicate. “And now we think he is telling us he wants to do more, to become more. We don’t know that this is the answer, but we have to give him that chance.”
They are similarly realistic in accepting the risks associated with the stem-cell treatments: “We weighed heavily the risks versus the potential benefits, and we really believe the biggest risk is that nothing changes,” said Burnaman. He noted that a child undergoing these procedures – especially with Cash’s undefined underlying medical condition – is uncharted territory. “Since so much of this is unknown, we ultimately had to follow our gut.”
Burnaman and Krolick are also acutely aware of the financial toll the decision will take on their family’s future.
Both parents estimate the initial trip to India will cost approximately $50,000; repeat trips, which Burnaman and Krolick are hopeful will be necessary because the treatment is showing signs of success, could bring the total cost in excess of $100,000. Insurance does not cover the expense, thus the impetus for Sunday’s “Change for Cash” fundraiser.
“This community has been so amazing and so supportive of us,” said Krolick, adding that though they are generally private people, they believe now is the time to get word out about Cash and stem-cell therapy. “But this is about more than Cash.”
“Are we doing this for us? Yes. But we believe, deep in our hearts, that we are on the cutting edge of something very important,” said Krolick. “Regardless of the outcome for Cash, we will learn something; we will have information to share with others, and perhaps we will help shape medical history.”
Added Burnaman: “And maybe we will inspire other people in their efforts to help their own children in some way.”
“Change for Cash” is 1-4 p.m. Sunday at the Aspen Elks Lodge, featuring food, drinks and a silent auction. For more information or to make a donation, visit http://www.changeforcash.blogspot.com