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There's an inconsolable sense of fear and helplessness that grips parents when their child faces a medical crisis, and it's a feeling Glen Stewart and his family experienced when his daughter, Ella, came down with a mysterious illness.

"In May of 2010, she started to get sick and was throwing up in the mornings," said Stewart, a former Petaluma resident. "She really had no appetite. This went on for a month or so. The doctor thought she might have acid reflux and put her on medication for it."

When Ella, age 6 at the time, failed to get better, a closer examination discovered that she was suffering from a rare form of brain cancer. To make matters worse, the cancer was growing on her brain stem, making its removal risky.

"It's a very difficult surgery to do," said Stewart. "They usually don't remove the whole tumor because they don't want to get too close to the brain stem in order to avoid doing permanent damage to it."

Ella's surgery at Kaiser Medical Center in Oakland lasted 14 hours, and four hours after surgery doctors found she had a hereditary blood-clotting disorder.

"She wouldn't stop bleeding," said Stewart. "She went back into surgery two days later to open up the tumor bed and relieve pressure. Everything bad that could have happened, happened."

Ella never woke up after surgery and was in a coma for the next three months. Her family, which includes her mom, Alycia Madden, step-father Mark Madden and step-mother Deborah Stewart, rallied around Ella in hopes she'd pull through soon. The challenges of paying the bills while not working, however, quickly began to take its toll.

"We intended to be down at the hospital for a few weeks, then go home and have her do rehab," said Stewart. "We had all taken time off work, but after a month we were running out of money and really didn't know what to do. We had no idea how long she would be in a coma so we couldn't make plans or tell our employers when we could go back to work."

A glimmer of hope came from a friend, who told Stewart to call Arnie and Susan Cohen, founders of the Carousel Fund, a Petaluma-based non-profit that provides financial support to families of children suffering from life-threatening illness.

Not knowing what else to do or what to expect, Stewart made the call.

"I must have sounded so distraught in my message," said Stewart. "Arnie called back in half-an-hour and we talked. The first thing he said was &‘Don't worry. We'll take care of it. Put it out of your mind and let's move on to what we can do to put you in touch with other people who have been through this with their kids.'"

Toward the end of Ella's coma, Stewart said he was beginning to lose hope. Ella's health insurance was preparing to drop her because of pre-existing conditions.

"That was about the time that President Obama's health care plan kicked in," said Stewart. "Under the new plan, we were able to switch to a new insurance provider and transfer her to UCSF Medical Center in San Francisco. It was a godsend that happened. Toward the end, though, it didn't look good for Ella and doctors began telling us we would need to have a conversation about her future. I was starting to get resigned to that happening."

Hope once again arrived in a number of phone calls from other parents who had been through similar situations encouraging Ella's family to hold on.

"Every few weeks I'd go through this low period, but then I'd get a call from someone with the Carousel Fund who had been through this themselves," said Stewart. "It gave us an extra boost. You know, it wasn't really about the checks from the Carousel Fund even though it helped keep us in our homes and cars, but it was this family of people that for the last 25 years the fund has touched and been a part of their lives in a substantial way. We are in this family now and in a circle with people who have gone through similar things. It gave us the strength to go on."

At the end of last November, Ella's eyes flickered open and remained open all day, which was a complete change from the occasional eye opening considered normal in coma patients. Stewart was adjusting Ella's pillow when she suddenly moved her head back and forth.

"I leaned in and said, &‘Ella, can you hear me?' and she shook her head up and down!" said Stewart. "I just fell to the ground in tears."

It's been a slow recovery for Ella, who is now 8 years old, but Stewart said she's been back in school as a third-grader at Oakgrove school in Graton. Ella uses a walker to get around, has labored speech, and a little paralysis on the right side of her face, but her cognitive skills are strong and she is cancer free. She will turn 9 years old on Oct. 7.

"She is doing phenomenal," said Stewart. "What Arnie and Susan do at the Carousel Fund saved us in so many ways. They gave us hope when we had lost all hope. That's what the Carousel Fund is all about. The money is secondary, even though it's a necessity. The bigger picture is that this family of people who have been through such horrible things have each other, and Arnie and Susan bring these people together."

The Carousel Fund holds its 25th annual Casino Night fundraiser on Oct. 6 at the Petaluma Veterans Memorial Building. The masquerade ball-themed evening features dinner, live and silent auctions, casino games and special performances by Jefferson Starship and The Family Stone.

Petaluma residents Susan and Arnie Cohen started the event in 1987 as a benefit for Bethany Rank, a little girl who had been diagnosed with leukemia after surviving brain surgery. The family was struggling financially and was on the brink of losing their home.

That first fundraiser raised $1,000, and another $900 was raised by ringing doorbells and asking for donations. That's when the Cohens and some friends came up with the idea of holding a casino night fundraiser with music, auctions, dancing and games. The first Casino Night raised nearly $30,000, which was split between the Rank family and the family of Joshua Hughes, another Petaluma child who was severely ill. Both children are alive and well today.

The success of the event inspired the Cohens to keep the fundraising going by creating the Carousel Fund organization to help other Petaluma families struggling with children facing life threatening illnesses.

"It's about hope," said Arnie Cohen. "We're grateful to a community who continues to help this organization, which in turn helps and gives hope to families. We had no idea that it would continue to do what it has done over the past 25 years. There are so many families that struggle and the fund has made such a huge difference in those families. We are proud to be a part of it."

Cohen said that to date, the Carousel Fund has raised just under $4.5 million for Petaluma families.

"When your child is ill, you shut everything else around you out to the detriment of everything else," said Stewart. "People lose their homes, cars and jobs because you can't balance your child being sick with everything else. If you didn't have an organization like the Carousel Fund, everything would fall apart while you're going through this. The fund allowed us the freedom to not have to think about our bills and just focus on Ella. I can never repay the fund for what they did for us."

The Carousel Fund begins with an open bar from 5 to 6 p.m. Oct. 6, followed by a buffet dinner by Rose Catering, music by the Randy Vincent Quartet, casino games and Texas Hold'Em with Vida Blue and Rollie Fingers.

There will be live and silent auctions for trips, dinners and sports and rock &‘n' roll memorabilia.

This year's special musical guests are Jefferson Starship and The Family Stone.

The Petaluma National Little League team will be receiving special honors during Casino Night. A PNL jersey, baseball and bat signed by the team will be auctioned off specifically to raise money for the Uganda Little League Team.

Tickets to the Carousel Fund Casino Night are $85 per person and available by calling 762-9136 or go online to www.carouselfund.org.

Tickets are also available at Wells Fargo bank, 762-4588; Athletic Soles, 763-0700; and Club One Fitness, 766-8080.

For more information, visit www.carouselfund.org.

(Contact Yovanna Bieberich at yovanna.bieber ich@arguscourier.com)

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