Sunday, November 16, 2008

Please donate for service dog to help boy with seizures

If you've seen 7-year-old Jack Berry recently, the first thing you probably noticed are his big, brown puppy-dog eyes, and a wide snaggletooth smile that forms deep folds of skin on each side of his mouth.Many in this community are familiar with Jack's story, and many in the Ellerbe community have reached out to his parents, dad Lee and mom Amy, with their condolences in the past. Now his family believes they have found a way that these same folks can do something tangible that will help him and his family.It involves a dog.A very special dog.

Jack began suffering from seizures as a six-month-old that cause him to convulse and turn blue and purple. Despite the family's earnest attempts to find a way to control them, Jack still suffers from these episodes and has multiple seizures at a time.Because of his condition, Jack can't do some of the things that other kids take for granted, like wandering off in the woods with his big brother Coleman, or playing unsupervised in the yard with his little sister, Ava.

However, Amy located an organization called 4 Paws For Ability on the Internet that provides service dogs for people with all sorts of ailments. The family truly believes that this could be the answer to some of those problems and give Jack the chance to be more of a kid and not have to be under such tight supervision all the time.

"This is a way to give him freedom," his father Lee Berry said.It's a way to give his entire family hope, and to give Jack a more normal life for a seven-year-old boy.His family has already suffered through years of frustration and trying different doctors and treatments. However, the Berry family now knows that Jack has a severe form of epilepsy called Drevat Syndrome. His condition went misdiagnosed and unrecognized for years until his mother's Internet research about her son's condition brought this syndrome to her attention, and she was able to ask that her son be tested for it.

Drevat Syndrome is a rare genetic mutation that was named for a French doctor who was the first to identify and describe it."There is no research being done, but we're hoping that there will be some research starting this year or in 2009," Lee said."Only 600 people in the world are known to have it, but more should be coming out as more people find out what it is and are tested for it," Amy said. "Because it's a genetic mutation, it lasts for a lifetime. He has seizures everyday, and that's something he will have to live with."

Lee explained that over the years the family has tried many treatments, including a special diet and a surgically-implanted device that regulates his nerve endings to suppress his seizures, but while they worked with varying degrees of success for a time, none have offered the family the kind of control over Jack's seizures that they need to feel secure.Jack likes to play outside, likes to play fight and pretend he's running his dad's farm equipment.

He is a rough-and-tumble boy, in every sense of the word.Lee and Amy, can't let him get far away from them, though. They always have to be basically within arm's reach because at any moment Jack could begin to bat his eyes and be unsteady on his feet. When he has an episode he drops to the floor with violent seizures that cut off the oxygen to his brain almost instantaneously."Jack takes 100 percent of our attention, except for the four hours a day he's at school" Lee explained.

"He sleeps in the bed with us, in case he has a seizure and doesn't wake up. He has to leave the door open when he uses the bathroom, and can't even take a bath without one of us there every moment because he's had them in the bathtub before."When he begins to have an episode, his parents have to inject him with a syringe that puts him to sleep for seven or eight hours. "Luckily, he hasn't had any brain damage yet, but he has no freedom, he's always being watched," Lee said.

He also explained that the family is fortunate that Jack's seizures usually come early in the morning and later in the day and evening, so he is able to attend a truncated school day."It seems like for some reason they come early, like at 5 o'clock in the morning, and then they start back up around four in the afternoon," he said."We would like to give him more independence, because he's growing and getting older," Amy said.

"So that his parents don't have to be with him every moment, and honestly, it's to help us as well because we have two other kids and it pulls time away from them."Lee summed it up. "It would help give all of us peace of mind.""Some of the dogs can smell the seizures about to happen, so we as caretakers can get him to a safe place so that he won't fall and hurt his head or injure another part of his body," Amy said.

It seems that for Jack, having the dog would mean companionship. "(I want a dog) so I can play with him, with my dog" he said with twinkling eyes, pulling his chin into his chest."He talks about it every day," Lee added, and Amy nodded her head, smiling with one side of her mouth.Because of the great need for service dogs, 4 Paws for Ability will only provide the dog if the money for it is raised through a fundraiser."We can't write an $11,000 check right now and get the dog, the money has to come from fundraising," Lee explained.

Both he and Amy said that they are hoping that local churches and businesses will be willing to help them, as well as individuals."The checks have to be made out to 4 Paws for Ability," Lee said."And in the memo line, write in 'In honor of Jack Berry,'" Amy added."I'm not bragging or anything, but we are well-known in this community," Lee said. "Everywhere we go, people ask us how Jack is, and they ask us if he's still on his special diet. I think people will want to help. It's not like this is some stranger asking you for something."

The family needs to raise $11,000 to get Jack a service dog, and they believe that that is an attainable amount of money.Once the money is raised, Jack and Amy will travel to Ohio, where the service dog provider is located, for two weeks while the dog is trained to attend to his needs and alert at the onset of a seizure.

Donations may be made to: 4 Paws for Ability, 253 Dayton Ave., Xenia, Ohio, 45385.


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