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Charity golf tournament to benefit child with PKD

By Staff | Sep 23, 2010

A golf fund raiser will be held for the Friends of Gavin Lawrey Fall Scramble to help raise funds for a young boy who was diagnosed with a rare neurological movement disorder on Oct. 9.
Brandi Lawrey said her 3-year-old son, Gavin was diagnosed with Paroxysmal Kinesigenic Dyskinesia (PKD), a rare neurological movement disorder and nocturnal seizures in February.
Gavin began showing symptoms within a week of Lawrey returning to work last November. Lawrey said she received a phone call while she was at work from her girlfriend to tell her that Gavin was shaking so much he could not get his fork into his mouth to eat his lunch.
When the Lawreys came home they watched Gavin and did not see any of the signs her friend told her about until three days later when the family went out to dinner. Lawrey said she witnessed the same symptoms her friend explained and made an appointment with a neurologist because it appeared that he was having seizures
All of Gavin’s tests came back normal between November and December of last year, but he was still having episodes where his hands, arms and shoulders would tremble. Lawrey said he also was experiencing difficulties with his motor skills.
“Sometimes when he wakes up in the morning he shakes so much he can’t walk,” she said.
After a visit to the St. Petersburg All Children Hospital the doctors discovered that the episodes Gavin was having at night were registered as seizures, but during the day they were not categorized the same.
Lawrey said the doctors classified his symptoms as an overlap between PKD and seizure conditions.
Gavin can sometimes go a whole week without showing any symptoms, but other times he experiences symptoms for a full day or multiple days in a row.
“We do our best to make it a better day when Gavin has bad days,” she said, adding that when he has good days they make the most out of it also.
Gavin goes to an occupational therapy every Monday, chiropractor visits anywhere from one to five times a week, along with attending a speech program for two and a half hours twice a week. He also has neurologist appointments from time to time.
She said the most amazing part of their journey stems from her daughter Makenzie attending kindergarten at Caloosa Elementary School last year. Lawrey said Bob Bravard and Angela Harbison, both teachers at Caloosa Elementary School formed a wonderful connection with her daughter.
Harbison, who was Makenzie’s teacher last year became a great support system for her when she needed to talk about what was happening to Gavin.
“Anytime she needed to talk she was there for her,” Lawrey said.
Makenzie took on a motherly role since her brother was diagnosed. Lawrey said her daughter nurtures him and takes care of him and is “so strong and brave in front of him,” but when her brother is not around she breaks down.
Lawrey said the problem they have encountered since her son started showing symptoms is with their insurance and the high deductible it entails.
The idea of the golf Fall Scramble, stemmed from Makenzie telling Harbison that her family could not pay their medical bills.
“It was amazing that these two teachers at my daughters school…that they love her so much that they wanted to do something for her brother,” Lawrey said. “The community support from a public school for a child that doesn’t even go to that school is amazing.”
The school raised more than $400 for Gavin last year to go into his trust fund for medical bills.
“How cool is that he isn’t even a student there,” Lawrey said. “When something bad happens in your life you get such blessings in such unexpected places.”
The Friends of Gavin Lawrey Fall Scramble will be held at Palmetto Pines Country Club on Oct. 9. Single player fees are $75 and team fees are $300.
The golf fall scramble will begin at 7 a.m. with a complimentary breakfast of coffee, donuts, muffins and bagels. From 7:30 to 8:15 a.m. registration will be held for range balls. The shotgun start, four-player scramble will begin at 8:30 a.m. At 12:30 p.m. a luncheon will be held with goodies bags.
Other activities include closest to the pin, 50/50 challenge and mulligans. A total of $5,000 in donations and gift cards will be auctioned off during the event.
Half of the money raised will be donated to the Gavin Lawrey Trust Fund and the other half will be given to the non-profit organization, We Move.
Lawrey said it is very important to her to donate the money to We Move because it helped her find information about PKD when her son was first diagnosed.
The event is hosted by Bob and Anne Bravard, Angela and Kirk Harbison and Brandi and Jeff Lawrey.
Call 458-0626 for more information.
Palmetto Pine Country Club is located at 1940 S.W. 9th Court.