Monday, September 11, 2006

Real 'fighter,' 14, to throw first pitchTuesday at Dolphin Stadium a remarkable young girl will be throwing the first pitch of the Marlins-Mets game.

Special to The Miami Herald

The Miami area is turning out to be good for a New York girl who has spent much of 14 years battling myriad medical problems.

Brandi Lee Larkins and her family in Buffalo, N.Y., started getting very sick at age 6 and doctors eventually diagnosed her with a rare genetic condition that can often lead to leukemia and other illnesses.

Relatives and friends organized a car wash to raise funds for her in 2002, taking in $2,000.

Now, Brandi will take the spotlight at another fundraiser, this time to throw the first pitch in Tuesday night's game between the Florida Marlins and the New York Mets at Dolphin Stadium in Miami Gardens.

''I am happy and nervous,'' Brandi said as she got ready to practice her throw with neighbors Angelo Salemi, 13, and his brother Baily, 10.

Brandi and her family will be traveling to Miami for the game, courtesy of the Donald Slayton Foundation.

After Brandi started getting sick 8 years ago, her family thought it was just a case of the flu until she coughed up blood and had a nose bleed. She was taken to the hospital and doctors found she suffered from Myelodysplastic Syndrome -- an inability to produce blood cells.

The condition is caused by Fanconi Anemia, a rare inherited bone-marrow failure syndrome that affects both children and adults. The disease may progress and convert into leukemia, said Brandi's mother, Jeannine Holas, who said she was shaken when she first learned about her daughter's diagnosis.

'At first, I thought, `Oh, it's just anemia,' then my stomach dropped down and my knees buckled when I heard 'leukemia' and all the possible complications,'' she said.

As a result of Brandi's illness, in 1998, the entire family -- Brandi's mother, her stepfather Roger Holas and her siblings Chad, then 3, and Kimberly, then 2, moved from Hudson to Buffalo so she could get medical attention from one of only five Fanconi specialists in the world.

The family expanded in 2004 with the arrival of Angelina Marie.

In New York, Brandi underwent two bone marrow transplants in 2002. The procedures took care of her blood cell problems but she remained at risk of developing other serious health problems, Jeannine Holas said.

Then, over the past three years, Brandi developed cataracts and became legally blind. Earlier this year, she underwent two operations to restore her vision.

''I see very good now,'' she said recently after her second eye surgery.

Brandi has lost her hair, has lost weight and has missed two years of school. But she has never lost her spirit, her mother said.

''Amazingly, she has been a real trooper through it all,'' Jeannine Holas said.

Brandi's treatment has cost about $5 million so far, Holas said, and keeping the family going while dealing with Brandi's medical issues has been very difficult.

''The financial difficulties have been tremendous. The stress affects our family relations and even our health,'' Holas said.

During the family's most difficult moments, the support of relatives, friends and the Donald Slayton Foundation has been crucial for them, Jeannine Holas said.

''It has been such an uphill struggle that, without their help, we would not have made it,'' she said. ``You just can't do this alone.''

That helping hand reached all the way to New York from Miami Shores in 2002 when friends and family who live in the village raised nearly $2,000. The Miami Shores Community Church helped Carol Gordon and Linda Adams, Brandi's aunts, whose son Matthew attended the church's school, organize a car wash to raise money for the family.

The Donald Slayton Foundation, which is dedicated to providing financial help to children with life-threatening illnesses and their families, has also been playing a big role assisting the Holases by organizing fundraisers for the past five years. This summer, the foundation donated a car to the family, said Phil Hartley, the foundation's president.

''Knowing Brandi has been one of the greatest experiences of my life. She is something special, she is a fighter,'' Hartley said.

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