Lola Lee Perez died Sept. 11 after a battle with Alpers’ Syndrome, a fatal disease that afflicts infants and children.
PALM HARBOR – The friends and family of a child fighting a progressive illness, which occurs mostly in infants and children, is asking for the community’s support with a benefit Oct. 13.
Lola Lee Perez, 2, was diagnosed with Alpers’ Syndrome in April.
In early March, she was rushed by ambulance to All Children’s Hospital and placed in a comatose state to stop a three-hour seizure. It was determined after six weeks of testing that Lola is a victim of a degenerative disorder that affects the central nervous system.
A committee of friends will host a fundraising event at Peggy O’Neill’s Irish Pub and Eatery, 1026 Florida Ave., from 3 to 9 p.m. The restaurant is donating a percentage of sales to the cause. Funds raised will go to the family to help them cope with the financial burden of Lola’s illness, including the cost of new and experimental treatments not covered under insurance.
Lola’s father, Ben Perez, was laid off from his job as a commercial airline pilot two and a half years ago. He was called back to work six months ago and must now travel four days a week to support his family. Lola’s mother, Valorie, gave up a career to take care of her daughter full time.
The girl’s extended family members, including a grandfather and grandmother, John and Danita Beck, and an uncle, Don Hurt, have been helping care for Lola while her father is away.
John and Danita Beck are owners of Beck Graphics, a full-service printing company in Clearwater. Don Hurt owns Your Claim to Frame in Palm Harbor. Lola’s brother, Benny, 7, is an active boy who plays soccer and loves the Tampa Bay Rays.
The prognosis for individuals with Alpers’ is poor. Those with the disease usually die within their first decade of life. Currently, there is no cure for the disease and no way to slow its progression.
Joanne Leman, who has worked at Beck Graphics for 10 years, is helping to organize the benefit. She said Lola suffers from a constant state of tremors. The young girl is unable to swallow and is being fed by a feeding tube. Lola has also lost her sight.
“We’re trying to grab people’s hearts and collect money for the family,” Leman said.
The disease is caused by certain genetic mutations in the POLG gene, which codes for the replication of new DNA strands. Two copies of the defective gene are required for active disease. A single copy conveys carrier status.
Jill Vandenboogaart, a friend of the family for many years, said many others are pulling together to help the Perez family.
“It’s very sad,” she said. “Your heart goes out to them.”
During Saturday’s event, a number of activities are planned for both children and adults including a silent auction, lucky number balloon sale and raffle. For a donation, children can have their faces painted while adults are treated to a neck massage. Artie Carbone of Pinellas Rental will donate a “get the soccer coach wet” dunk tank.
Eight live bands will play during the six-hour event: Bambooda, Between Bluffs, Cory McHugh, Freelow, Noah Broe and The Groove Co., Robert and Mary Sutherland, Shoeless Soul and The Love Tribe.
A number of local businesses will donate a variety of gift certificates and items: AquaStone Nails & Spa, Green Market Cafe, Let’s Ride Motorcycle Gear & Accessories, Sandpearl Resort and more.
The cover charge for the benefit includes a raffle ticket. Balloons will be sold for $5 and can be redeemed for a prize worth at least $10. Norman Marden Estate Jeweler has donated a diamond ring with a retail value of $1,600 for the silent auction.
The event will be held both inside the restaurant and in a fenced backyard. Guests can bring along lawn chairs and tables for set up outside.
Those who are unable to attend the benefit may make donations by calling Certified Public Accountant Ted Freidinger at 786-1600. Donations also may be mailed to 1114 Florida Ave., Suite B, Palm Harbor, FL 34683. Make checks payable to Lola Perez.
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