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Team Willow helps Pasco family of sick toddler

NEW PORT RICHEY — She sits in her high chair, dressed in pink plaid, squealing and babbling. She grabs small morsels of cereal from the tray and stuffs them in her mouth. She giggles easy and often, and loves to smile.

At first sight, Willow seems like any other 14-month-old baby.

But the blue-eyed girl with the dark brown faux-hawk shows signs of an incurable disease called tuberous sclerosis complex, a genetic disorder that causes tumors to grow on various organs.

A tumor is latched onto the right ventricle of her heart. Willow could grow up to be normal or severely disabled, depending on how the disease affects her tiny body.

Willow's medical care and twice-weekly doctor visits have put the Hamilton family about $60,000 in debt — even though they have health insurance. The bills became so overwhelming that the family could no longer afford the premiums, so they dropped their coverage and held their breath for a month until Medicaid accepted Willow.

Friends have formed Team Willow to raise money for the family. Kala and Kevin Hamilton are humbled by the support, and they have hope in their daughter's strength.

They picked out Willow's name after doctors told them about the long struggle their baby girl would face.

"You can bend a willow tree," Kala Hamilton explained, "but it never breaks."

Doctors spotted Willow's tumor while she was still in the womb. An ultrasound at the 30-week mark revealed the growth on her heart.

The doctor's finding floored Hamilton, 32, who had lost a child to spina bifida four years earlier.

"We brought a pastor in to pray over her (Willow), because we didn't know what was going to happen," Hamilton said of Willow's birth. "It was a range of, 'She could be fine,' or, 'She could die.' "

Willow was born on Sept. 8, 2008 at Bayfront Medical Center in St. Petersburg. Then she was taken to All Children's cardiovascular intensive care unit.

Doctors there expected the 6-pound, 3-ounce girl to have difficulty breathing or a collapsed heart. She had neither, but doctors kept her there for a week, running a gamut of blood and heart tests.

She came home eight days later, but twice a week she still goes back to All Children's for ongoing tests.

The tumor suggests Willow may have tuberous sclerosis, doctors said, but they can't make a definitive diagnosis unless more symptoms — or more tumors — show up.

Willow takes seven medications a day through a nebulizer machine. Some are antibiotics. Others treat a recent bout with asthma. She also has a feeding tube in her belly 16 hours a day, although doctors say her unwillingness to eat isn't connected to her other medical issues.

She receives weekly speech and physical therapy from a home nurse. She doesn't walk yet, but can muster words like "Mama."

Willow recently developed a separate issue doctors say may be immotile cilia syndrome, which causes the lining of the nose, throat and lungs to function abnormally, said Dr. Jim Dwyer, Willow's pediatrician at North Pinellas Children's Medical Center in New Port Richey.

The condition causes mucus to sit on her lungs instead of moving out to the throat, he said. That makes Willow more prone to respiratory infections.

Although Willow hasn't been conclusively diagnosed with either tuberous sclerosis or immotile cilia syndrome, they are what Dwyer calls "potentially chronic conditions."

"It's hard to speculate how they will progress and stabilize," he said. "We're still in the infancy."

• • •

Kala Hamilton teaches autistic children at Seven Springs Middle School. She quickly burned through her paid sick days. She works as much as she can, but now any days she needs to take off to be with Willow come out of her own pay.

Kevin Hamilton is partial owner of a Hungry Howie's. The couple has two older children: Dakota, 4, and Alexander, 3.

Kala Hamilton has health insurance through the school district, but said it was too expensive to add the rest of the family to her policy. Kevin Hamilton and the kids were on a Blue Cross/Blue Shield plan purchased on the open market.

But the insurance didn't cover everything, and the medical bills for Willow's care quickly piled up into the tens of thousands of dollars. The couple secured other insurance options — Medicaid for Willow, state-run KidCare for the other two children — but still have the mountain of medical debt.

That's when friends came to the rescue.

Stacy Swain, a friend and fellow teacher at Seven Springs, had her son three days before Willow was born. She offered to donate some of her sick time to Kala Hamilton, but a school district policy only allows that among family members.

"She was on week four of being with the baby with no pay, and we said, you know what? Let's form a team to help her," Swain said.

Eight people who are friends and family of the Hamiltons have formed Team Willow to hold school fundraisers to benefit the family.

There are pizza sales at school. Candy sales during drama events. A literacy fest with a raffle.

So far, they've raised $800.

Kala Hamilton learned about Team Willow one day while she was flipping through Facebook and saw a page dedicated to the fundraising efforts. Swain knew her friend would rather help someone than be helped, so she had kept the team idea a secret.

"I was bawling," Kala Hamilton said. "You wonder, 'Why are they choosing to help me?' There's so many other people in need. But it's just amazing."

Hamilton tries not to think about her daughter's future. She takes things day by day and just wants her daughter to be happy.

"Our fear is that she'll stay unhealthy for so long, it would kill her spirit," Hamilton said. "We don't want that to go away."

Camille C. Spencer can be reached at cspencer@sptimes.com or (727) 869-6236.

Fast facts

Pitch in

To help with Team Willow, call Stacy Swain at (727) 364-1720.

Team Willow helps Pasco family of sick toddler 11/07/09 [Last modified: Saturday, November 7, 2009 3:01pm]

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