A community that cares

The Carousel Fund continues its commitment to helping Petaluma families in need

Terry Hankins Hailey Caldwell shows some love to younger sister Maura, who has recently been on the receiving end of the Carousel Fund’s generosity. Zoom Photo

CAROUSEL FUND CASINO NIGHT What: The 20th annual Carousel Fund Casino Night fund-raiser for local families of children suffering from catastrophic illnesses. Special musical guest is Eddie Money. There will be a light buffet, silent and live auctions and dancing. When: 6 p.m. to midnight, Oct. 6 Where: Petaluma Veterans Memorial Building, 1094 Petaluma Blvd. South. Cost: $65 in advance only.A few tickets are available at Bank of Petaluma. Information: www.carouselfund.org for tickets.

Early evening sunshine lights a gentle glow in the family room of what appears to be a perfectly normal Petaluma family. Dad Colin Caldwell, is home from work as a seventh-grade history teacher at Kenilworth Junior High. Mom Dani is dashing up and down the staircase with piles of laundry as the couple’s two lively daughters slide down the steps in a swift backward motion.

Two-year-old Maura is giggling as she races big sister Hailey, 5, to the bottom of the staircase. All is as it should be on an average weekday evening at the Caldwells’ westside home. Maura’s finished with the sliding game and settling on a comfy couch with the family’s cat curled up by her side, chattering away at pictures in her favorite book. Beneath her glossy brown curls, a small tracheotomy is visible in the center of Maura’s tiny neck.

The only other indication that something is radically out of place in this otherwise classic family scene is a small hospital table in the corner of the room. Complete with ventilator and an oxygen tank. A sturdy crib is tucked alongside this neat arrangement of life-saving medical implements.

This is Maura’s headquarters. Every breath she takes in her sleeping hours is connected by her lifeline to this compact medical station. Streamlined, but absolutely essential for Maura, who suffers from an extremely rare pulmonary condition called central hyperventilation disorder.

Only 200 Americans are currently diagnosed with this obscure carbon dioxide disorder, which is retained in the body at perilously high levels during sleep. “One part of the brain tells us how to breathe during waking hours and another controls our breathing during sleep,” explained Colin. “Maura cannot breathe in her sleep without the support of a ventilator and alarm system. It’s essential that she be monitored by a nurse, all night.”

Diagnosed at eight months, Maura’s story has captivated her hometown’s caring community, and thanks to the Carousel Fund and the on-going outreach of organizers Susan and Arnie Cohen, this annual event continues to embrace the Caldwell family in their tireless fight to keep little Maura alive and well with the provision of critical night nursing support. The Carousel Fund is a nonprofit organization that raises funds for Petaluma families with children suffering from catastrophic illnesses.

“We were in a truly desperate place,” said Dani. Eleven weeks after baby Maura’s neurological nightmare began, the Caldwell family began spiraling into unfathomable depths of vulnerability and despair, trying to figure out a seemingly impossible financial and practical game plan for the four of them to return home.

“Right there at our lowest point in Maura’s room at Children’s Hospital, Oakland, the telephone rang, and it was Arnie,” said Dani. “He said that we were not alone, that we had the support of our community and that it would be a constant force in Maura’s life.”

Cohen and his network of volunteers set to work immediately, spreading the word for urgent nursing support and providing Maura with a $3,000 oxygen monitor and other essential medical supplies.

Eighteen months into their relationship with the Carousel Fund, Colin and Dani believe that they would simply not have survived this harrowing ordeal without the outpouring of emotional and financial support from generous community benefactors.

“We wouldn’t have made it,” said Dani, who, along with her dedicated husband, dealt with severe sleep deprivation for months at a time. “We would surely have lost our primary income, our home and worse. It doesn’t bear thinking about. We can’t go there.”

Maura has started pre-school, like any happy-go-lucky 2-year-old. Although she enjoys her lively sessions at Spring Hill Montessori, her school day stops abruptly at nap-time. Similarly, any long car journey must be undertaken with ventilator and oxygen tank on board. As Maura grows and matures, her condition will remain with her always. “We give thanks each day that we live in Petaluma,” said Dani.

(Contact Frances Rivetti at argus@arguscourier.com)