Saddleback Lends a Hand as a Mother Fights for her Child's Life

Imagine carrying a 31-pound, 3-year-old girl up and down stairs with a 20-pound ventilator and all of its tubes and cords. Now imagine that dropping the girl comes with serious—potentially fatal—consequences.

This has been the frightening plight of Danielle Browne for over three years. Danielle's daughter Cambria was born with spinal muscular atrophy, a terminal genetic disease.

The mother found out during pregnancy Cambria would have SMA. After her husband left her for choosing to keep her baby, Danielle moved into the upstairs bedroom of her father's Cypress condo, she said.

So the dreaded steps have been Danielle's responsibility to scale each day.

But thanks to volunteers from Life Church in Irvine, with assistance from Saddleback Valley students and staff, Cambria will soon have a first-floor bedroom.

Cambria

Cambria is losing control of her muscles, but she has the mind of an able-bodied child.

"She definitely has a little personality on her," Danielle said. "She does not let anybody stop her in the least. She has her own opinions and will tell you to the best of her ability. She's amazing, she's the light of my life, she's strong."

Cambria's 24-hour care is taxing, her mother says. The girl requires a ventilator to breathe and a feeding tube to swallow.

Her mother frequently uses a vacuum tube to prevent her daughter from choking. A chest cold means an emergency room stay, Danielle said, because Cambria can't cough.

Since she was 1 year old, the girl could not hold her head up. She can smile, though, and move her eyebrows.

"She has this zest for life that keeps me going," Danielle said. "When I'm having bad days and frustrated ..., all she has to do is smile and tell me Mommy I love you. It just makes all that I fight for worth it."

Spinal Muscular Atrophy

Julie Prendiz of San Clemente is the president of Hope for SMA. She lost her granddaughter to the disease in 2009 and has hosted Danielle and Cambria while the room is renovated.

Prendiz said SMA comes in five types. Cambria has the "most aggressive," type one, she said. Ninety percent of type one infants die before they reach their first birthday, she said, so "Cambria is fighting the odds."

How is this genetic disease passed on?

"Both parents have to be carriers of this gene," Prendiz said. "One in forty people carry this gene unknowingly."

When two carriers have a child, the child has a 25-percent chance of suffering from SMA, Prendiz said. It affects one birth out of every 6,000, meaning on average a child every 12 hours is born with SMA, she said.

A New Home

When mother and child return home, the living room will be transformed into a handicap-accessible bedroom. Saddleback's technical theatre department is painting handmade princess artwork for the new room.

"(It will) make it child-like and not so hospital-like," Danielle said. "I'm really excited to see that and to thank them for all their hard work."

Peter Diaz of Diaz Construction in Riverside is donating his time and resources to rebuild the room.

Danielle looks forward to the day she comes home and never worries about tripping on her upstairs trek with her daughter. She said the show of support from strangers has been "overwhelming."

"I've cried many times," Danielle said. "I just can't believe there are so many people who don't know us who want to help. Thank you just will never be enough."

Cambria will be four in November.