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'Million dollar baby' Locals come together to raise funds for toddler's transplant

  • Mallory Hill smiles as her daughter, Giovanna, shyly reveals the identity of her kidney donor.  "Daddy," she said, grinning, then going back to her card game while waiting for players to finish the tournament fundraiser in ehr honor on Saturday.

    Mallory Hill smiles as her daughter, Giovanna, shyly reveals the identity of her kidney donor. "Daddy," she said, grinning, then going back to her card game while waiting for players to finish the tournament fundraiser in ehr honor on Saturday.
    Holly Kee photo

  • Bryce Hill will literally give a piece of himself to his daughter, Giovanna, on Tuesday, when his left kidney will be transplanted into the toddler and hopefully save her life.

    Bryce Hill will literally give a piece of himself to his daughter, Giovanna, on Tuesday, when his left kidney will be transplanted into the toddler and hopefully save her life.
    Holly Kee photo

  • Giovanna Hill poses with fundraiser organizer, Anthony Rinella, left, and tournament winner, Toeric Cole.

    Giovanna Hill poses with fundraiser organizer, Anthony Rinella, left, and tournament winner, Toeric Cole.
    Holly Kee photo

  • Adam Moore and his son, Austin, compete in the golf tournament fundraiser for Giovanna Hill.  Moore's wife was in line to donate her kidney to the Pittsburg toddler until her dad, Bryce, was declared a "perfect match."

    Adam Moore and his son, Austin, compete in the golf tournament fundraiser for Giovanna Hill. Moore's wife was in line to donate her kidney to the Pittsburg toddler until her dad, Bryce, was declared a "perfect match."
    Holly Kee photo

 
BY HOLLY KEE
Staff Writer
hkee@localsouthernnews.com
updated: 8/13/2019 2:05 PM

MARION -- They call her "the million dollar baby," and while her camera-ready smile could easily be the reason, it's the cost of Giovanna Hill's medical bills that is at the heart of the nickname.

About four dozen people gathered at Marion's Ray Fosse Park Miniature Golf Course on Saturday to help relieve at least some of the family's financial burden as Giovanna and her family begin the next leg of her journey to treat Congenital Nephrotic Syndrome of the Finnish Type (CNF).

Former Marion Mayor Anthony Rinella organized a Miniature Golf Tournament with all funds being donated to the family.

Rinella said that while he was disappointed that only about 30 golfers played, he was also "blown away" by the generosity of others.

"We probably had as many people just stop by to give a donation as we had play," he said. "We had one anonymous donation of $500."

The participants came from all over Southern Illinois to help the little blond with the infectious smile.

In fact, the winner, Toeric Cole, is a correctional sergeant at Shawnee Correctional Center who lives in Vienna. He had no connection to Giovanna's family.

"I just heard about it and wanted to come up and help," he said.

Navigating Giovanna's health issues has been the mainstay of the family's life.

"I was pregnant when we found out," said Giovanna's mom, Mallory.

After a routine PENTA test, Mallory said her levels came back extremely high.

"They thought she had spina bifida," said Mallory. An amniocentesis at 25 weeks provided a diagnosis of CNF, a rare kidney disease caused by genetic mutations that damage the body's ability to retain protein. It occurs in only three or fewer births out of 100,000.

Doctors did not expect Giovanna to survive, but she has defied the odds.

Until age 2, Giovanna underwent albumin infusions.

"Then, her kidneys quit working enough that she started dialysis," said Mallory.

For the past year and a half, Giovanna has undergone dialysis.

However, the disease has caused other health issues, including thyroidism, anemia, and high blood pressure. In May, the 3-year-old went into heart failure.

There is no cure for CNF. The only hope for a treatment lies in a kidney transplant.

Doctors were initially worried that Giovanna's parents might be carriers of the disease. Donors, including Jessica Moore, lined up to volunteer.

"How could I not?" she said, smiling down at Giovanna playing a card game at the park on Saturday morning, while her husband, Adam, and son, Austin played in the tournament. "It was a door that God opened and I was ready."

However, doctors determined that Giovanna's dad, Bryce, was not a carrier but was a perfect match.

Giovanna knows she's getting a special gift and who is giving it to her. "Daddy," she answered shyly, with a smile lighting up her face.

The family will leave for St. Louis on Monday. On Tuesday, doctors will take Bryce's left kidney and transplant it into Giovanna.

"She will be in the hospital for 5-10 days," said Mallory. Giovanna will be at Children's Hospital while Bryce will be at Barnes-Jewish. He will also miss at least a month of work.

Once released from the hospital, Mallory said that Giovanna will be "in a bubble" at home for about eight weeks, isolated to prevent infection.

Bryce said being Giovanna's donor was an easy decision.

"I'm relieved that we can get to this point," he said, "and let her see what a little normalcy feels like."

You can follow Giovanna's journey on her Facebook page, Prayers for Giovanna Ainslee Hill.