bserver O
SARASOTA
You. Your neighbors. Your neighborhood.
DIVERSIONS NEIGHBORHOOD
NEWS
Downtown merchants share their thoughts on parking meters.
Three bewitching actresses cast spell on Sarasota. INSIDE
PAGE 3A.
OUR TOWN
Thursday, JUNE 23, 2011
It’s a ‘Big Night Out’ at the first Friday Fest of the season. PAGE 5A.
With their 14-month-old son newly diagnosed with a rare terminal disease, a Sarasota couple pursues a cure that has so far eluded doctors and scientists. beauty and the feet
+ Picture this: a Fourth of July photo-op This annual photo contest is as American as apple pie. And, you still have a chance to snap up a slice of American life for our “Spirit of America” contest. Submit your photos by Saturday, June 25 online at YourObserver.com. Vote for your favorite photo up to 10 times a day from June 25 through June 27, by clicking on your favorite photo. The grand-prize winner will receive a digital camera and be featured in the “Spirit of America” special section, which will be published June 30.
Ashley Groff and Matt Smith say despite his rare disease, their son, Jaymesun, is as strong and active as any other toddler.
KEEPING THE FAITH
Loren Mayo
Ruth and Elmer Berkel
+ Isn’t she lovely? Ruth Berkel wanted to be crowned Ms. Puerto Rico this year. Because there was no one else running, and therefore no contest, she decided to write the committee a letter, just to see what would happen. “I applied for the position, and they gave it to me,” Berkel said. The 75-year-old packed her bags and left Monday for Puerto Rico, where she’ll be crowned Ms. Puerto Rico Senior America 2011. But that’s not her only title she’s won. In 2009, she was crowned Ms. Florida Senior America. Her motto: “Relax and enjoy.”
SEE OUR TOWN / PAGE 10A
By Robin Roy | City Editor
Son Shine Jaymesun Smith loves to laugh. With an ear-to-ear grin, he trots around the house in his baby walker surrounded by multi-colored stuffed animals. If it weren’t for the glasses and hearing aids he wears, it would be difficult to detect anything wrong with the 14-month-old boy; that he has a rare, terminal disease. “(The disease) doesn’t affect his happiness,” says his dad, Matt Smith. “He’s always happy.” Jaymesun is the first child for Ashley Groff, 25, and the second for Smith, 29. Jaymesun suffered from double pneumonia at birth and spent 11 days in intensive care. “He almost died in his first
few days,” said Smith. “The doctors told us that he’s a fighter. He’s very strong.” The little boy recovered, but soon his parents began noticing a steady deterioration in his hearing and sight. Medical tests revealed that Jaymesun suffered from a rare disease called leukodystrophy, which is a deterioration of the brain lining that causes neurons to misfire. That leads to blindness, loss of hearing, loss of motor skills, the inability to speak and other serious problems. Researchers say the average lifespan of a child suffering from leukodystrophy is anywhere from two to 10 years, although there has been one case of
someone living with it to age 25. Although he was diagnosed just two months ago, Groff said she knew something was wrong while she was pregnant. “I had a feeling something was going to be different,” she said. “I think now that was God preparing me.” There was quite a bit for which to prepare. Jayemesun is deaf in his left ear and suffers severe hearing loss in the right. The vision in his right eye is impaired. He cannot talk, and he cannot walk. Doctors are not sure if he will ever do either. He also has an aversion to the texture of regular food, so he still eats baby food. Groff is unable to work be-
Rachel S. O’Hara
What is Leukodystrophy? Leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the brain lining that insulates nerve cells. It causes blindness and deafness, as well as the inability to speak, walk and eat. These disorders tend to get worse throughout the life of the patient.
cause of Jaymesun’s rigorous schedule of therapies and the special care he needs at home. Monday is physical therapy. Tuesday is occupational therapy. Wednesday comes speed therapy and more physical therapy. Thursday is another day of occupational therapy. Friday, Saturday and Sunday
SEE JAYMESUN / PAGE 2A
INDEX Briefs....................4A Classifieds......... 16A
Cops Corner....... 14A Crossword.......... 15A
Opinion ...............6A Permits.............. 13A
Real Estate........ 12A Weather............. 15A
Vol. 7, No. 32 | Two sections YourObserver.com