Golf tournament set to benefit child with rare medical condition
The second annual Friends of Gavin Lawrey Fall Scramble will be held on Oct. 8 to help raise funds for a Cape Coral family with a 4-year-old son who was diagnosed with a rare neurological movement disorder after teachers at Caloosa Elementary School noticed something amiss.
“That school has been a blessing to us,” Brandi Lawrey, Gavin’s mother, said. “They have been supportive in so many different ways.”
Gavin was diagnosed with Paroxysmal Kinesigenic Dyskinesia (PKD), and nocturnal seizures in February 2010. The diagnosis came after they witnessed Gavin having difficulties getting his fork in his mouth to eat because of the amount of shaking that occurred.
Brandi called a neurologist because she expected it was because of seizures.
Although the tests came back normal, Gavin was still displaying the same symptoms of his hands, arms and shoulders trembling, along with motor skill difficulty.
After a visit to the St. Petersburg All Children’s 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.
The symptoms were later classified as an overlap between PKD and seizure conditions.
Brandi said in the past year, Gavin also has experienced silent seizures and a grand mal seizure while at school during speech class, in addition to the hyper motor nocturnal seizures.
When Gavin experiences a seizure, she said he zones out, his eyes roll and he does not respond.
“He has taught me that a bad moment will pass and good moments will follow,” she said about her son. “Bad moments are just that, bad moments. It doesn’t have to be a bad day, or even a bad week.”
Makenzie, Gavin’s 7-year-old sister also plays a tremendous role in taking care of him.
“She is so intuned to him,” Brandi said. “She will tell me when he is going to have an episode, she sees the triggers and knows the signs.”
Brandi said sometimes she finds Makenzie sleeping on the floor outside of his bedroom door to make sure he is OK. She has also found her daughter rocking Gavin in her lap while he is having an episode.
Brandi said there are two Gavins – the happy, fun, playful and doing what every other kid does, and the other who cannot walk one step or lift his head off his pillow.
In January, Gavin began having pulmonary issues. Although the four chest X-rays that were done came back beautiful, his mother said, he still becomes winded and can barely breathe when he walks down a flight of stairs.
“His endurance is so slow at this point,” Brandi said. “He holds his chest and says ‘my chest hurts, Mommy.'”
Although the doctors do not know what is causing the symptoms, Gavin is currently being treated for asthma. His mother gives him a breathing treatment in the morning and the afternoon, along with the use of an inhaler before a physical activity.
On Friday he had surgery to remove a mole on his head that had melanoma qualities and characteristics, which went really well.
“He is my warrior,” Brandi said.
To keep Gavin comfortable, the family spends between $300-$900 on medication a month. The frequent tests and doctor visits has also affected the family’s financial situation.
In addition to medication, Gavin goes to a chiropractor, speech class, occupational therapy and physical therapy throughout the week.
“If it wasn’t for Caloosa we would never of had the fund raiser and we would have lost our house by now,” Brandi said. “I feel so lucky to have the school and community behind us; the support is such a blessing.”
Angela Harbison, kindergarten teacher at Caloosa Elementary School, said the idea to hold the fund raiser stemmed from a bracelet fund raiser she held, along with Friday jean day. She said the teachers who wore jeans on Friday were asked to make a small contribution to the Gavin Lawrey Trust Fund.
Harbison said she had Makenzie when she was in kindergarten and would hear about the struggles her brother was encountering.
“She is very mature, aware and very brave,” she said. “I admire her so much, she is a strong little girl.”
Since then, Harbison has become very good friends with the family.
“We have practically become family now,” she said.
Bob Bravard, a fifth grade teacher at Caloosa Elementary School, said since he and his wife are golfers, he decided to go home and explain what Gavin’s situation was, along with suggesting a golf tournament, which his wife fully supported.
“It would be kind of nice to put together a golf tournament to see if we could raise money,” he said. “We are trying to give back … one way that we could.”
Since he began helping the Lawrey family, they have also become very close.
“She is always looking at the bright side of things, it is a blessing that I got to know her,” Bravard said about the relationship that formed with Brandi.
Last year the event raised around $10,000 from the tournament and the silent auction, which Bravard said helped the family pay its medical bills.
Brandi donated $3,500 to the non-profit organization, We Move because it was the only website that helped her find information about PKD after her son was diagnosed. Proceeds from the tournament this year also will be donated to the organization.
“I am so excited, it was so much fun last year,” Harbison said about the tournament. “I hope to raise more this year to help out the family.”
The registration is $75 for single golfers and $300 for a team of four, which can be done before or on the day of the event. The fee includes a complimentary breakfast, luncheon and goodie bag.
Registration can be done by calling Bravard at 239-458-0626, email him at annandbob
@embarqmail.com or stop by Palmetto Pines Country Club, where the tournament will be held.
The silent auction and complimentary breakfast will begin at 7 a.m. with registration and the driving range opening at 7:30. The shotgun start for the tournament will begin at 8:30 a.m. and lunch will be provided at 12:30 p.m. The announcement of the silent auction winners, raffle and awards will begin at 1 p.m.
Harbison said they are asking individuals to donate bears and blankets the day of the tournament so they can donate them to The Children’s Hospital, along with Gavin’s neurologist.
“Gavin’s struggles have brought such amazing people in our lives,” Brandi said. “There are so many blessings in the difficulties and that is where I like to put my focus. You need to focus on the beautiful movements in the dark days or the dark moments.”
Brandi said the PTO at Caloosa has also helped her family in various ways, which has touched her and her family as well.