Photo By: Eliza Ridgeway/Town Crier
Los Altos 2-year-old Nate Green has been drinking in vocabulary words, as toddlers will. He’s learned “taco truck” and “airplane” – but also “saline suction,” “nebulizer” and “trach tie.” He might know more about the esoteric world of medical equipment than you do.
Since Nate first became ill as an infant, he and his parents have developed a facility with medical sleuthing, advocacy and obscure expertise. His mom, Annie, who grew up in Los Altos, first searched for advice online when her son, who had trouble taking deep enough breaths on his own, needed a tracheotomy and portable ventilator to survive but lingered without a diagnosis. She learned about a rare genetic disorder, Spinal Muscular Atrophy Respiratory Disease (SMARD), on the blog of another mom raising a child with a “trach.”
“As I read about it, I thought, it fits!” she said.
And indeed, Nate’s blood work showed inherited genetic mutations from both his parents that together inhibited production of a key protein for muscle development and regeneration. He had SMARD, a disorder so rare that only approximately 50 families in the world are known to be coping with it.
Nate is growing bigger, and his family dreams of getting him into a motorized wheelchair that will let him zip around and experience the world. But that brings another new skill for his parents to learn: fundraising. They’re planning a 40-mile bike ride fundraiser Oct. 20 to raise funds for a wheelchair-accessible van that would help Nate leave the house. And they plan to continue raising funds for research into SMARD. Only one lab in the U.S. studies the disorder, and its work depends entirely on funding from families like Nate’s.
Asked what it’s like to wade into the fundraising fray, promoting a little-known cause, the Greens were undismayed by the multitude of worthy causes competing for attention.
“People are far more generous than you think – they’re always willing to give if they have direction,” Nate’s dad, Scott, said. “The best way to get them to help is to intersect their interests with something that is practical, helpful. We’ve got a cause, and we’ve found something people will enjoy doing.”
“I think it makes them feel good that they can do something,” Annie said. “It’s not just their money, but their time and physical effort that they’re giving.”
Scott recently started working at Fundly, a Los Altos business that provides fundraising tools for projects like the Green’s bike ride. Fundly connects to social networks to build community around events like this bike ride, which the Greens hope to establish as an annual fundraiser for SMARD research.
Annie has also created a blog herself, in response to the critical information her family gleaned from the work of others.
“I’m typically a very private person and don’t relish sharing details from my life, but I’ve come to the point where I think it’s important, and can help somebody,” Annie said.
Sharing Nate’s photos, successes and day-to-day life reminds supporters and the world at large that behind the diagnosis and medical language, a real little boy with interests and personality is growing up.