Boy with rare disorder will have surgery to repair hand

Published: Thursday, January 22, 2009 at 6:01 a.m.
Last Modified: Wednesday, January 21, 2009 at 11:38 p.m.

When 7-year-old Gesnel Seide and his grandparents heard of open-air clinics in their native Haiti, they would make the seven- to 12-hour trek to the mountains only to find the medical team had already packed up.

It wasn't until last year that the family made it to the clinic in time and met Miriam Frederick, mission director and president of the relief and development organization World Harvest Missions. Frederick was surprised to see Gesnel's right hand.

"It's the size of the biggest baseball glove you could ever imagine," she said.

Gesnel was born with macrodactyly, a rare condition affecting the size of his thumb, index finger and middle finger, his hand and arm. He will be having six to eight surgeries on his hand, beginning with today's surgery at Shands at the University of Florida.

There have only been 100 known cases of the condition, Frederick said.

After initially meeting Gesnel, Frederick took him to a hospital in Port-au-Prince, where a doctor said his entire arm would have to be amputated.

To her this was not an option, and she decided to look to the United States because the technology would be better.

First, she consulted with an orthopedic surgeon in Fort Myers, who agreed that amputating Gesnel's arm was not the best option.

Frederick then consulted a California surgeon, but the distance from her home in Lake Worth made surgery there impractical.

She then found Dr. Paul C. Dell, a hand surgeon at Shands, who has a camp for children with congenital hand conditions called Hands to Love.

Dell, Shands and private donors will be helping ease the financial burden of the surgeries.

Today's surgery will take several hours, and Dell will work on taking the bulk out of and shortening the arm, Frederick said.

Following the surgery, Gesnel will have to wear a cast for six to eight weeks.

His surgeries will take place over the next few years, and he will have therapy in between, Frederick said.

Frederick has become the legal guardian of Gesnel, so she can make legal decisions for him while his grandparents remain in Haiti.

Gesnel has spent the past year living with Frederick in Lake Worth. During that time, Gesnel has learned English and has shown to be a talented soccer player.

And he continues to surprise Frederick, she said.

On a birthday trip to the amusement park Boomers! in Boca Raton, he was advised not to rock climb. But he did and made it to the top three times, using only the two good fingers on his right hand.

"I said how did you do this. He said, 'I just always say to myself - I keep saying to myself - I'll never give up, I'll never give up, I'll never give up' " Frederick said. "And that's what he has inside of him."

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