Community rallies around girl, 5, suffering from rare disorder
PITTSFIELD -- At 5 years old, Giana Ott is already a tough cookie.
One of four siblings, she loves her family, likes to play soccer, watches lots of Disney cartoons and can't wait to see her friends when school starts up again.
But to enjoy all these things, Giana has to battle all day, every day, to overcome blindness in her right eye, weakness on her left side, and recurring seizures.
She suffers from schizencephaly, a rare brain disorder discovered in Giana shortly after her premature birth.
Doctors at the time predicted she would be unable to walk, and would be in a wheelchair for her whole life, according to her parents, Mary and Richard Ott.
They didn't really know Giana.
"She's a fighter," Mary Ott said. "She has exceeded everyone's expectations. She's got the determination to do everything they never thought she would."
But schizencephaly never goes away, and it never gets better.
It is a progressive disease that only worsens over time. Recently, as predicted by doctors, she began suffering seizures while sleeping. The seizures are likely to get more frequent, and possibly more severe. There is the potential that it will be a life-limiting condition.
At some point it is likely that she will need a wheelchair -- she is already learning how to use one.
But now Giana has something to look forward to -- her friends and family are raising money to pay for a service dog from 4 Paws For Ability, an Ohio firm that trains service dogs for people with specific medical challenges.
Unfortunately, the cost of a service animal is not cheap -- the $15,000 fee is a steep challenge for a family of six with a moderate income.
Once trained, the dog will be able to tell when Giana is about to have a seizure, and will alert those around her to improve the odds that she will endure the seizure safely.
The dog also will provide emotional companionship and perform simple tasks like picking up dropped items or opening doors.
So Giana's friends and family are throwing a spaghetti party, with the help of UNICO, at the ITAM Lodge on June 24, complete with games, crafts, music and more than a couple dozen donated raffle prizes.
The hope is that they will be able to raise the funds needed to provide her with the help and companionship of a 4 Paws service dog.
"We're just trying to give her the best opportunities we can," Richard Ott said.
Giana said she looks forward to having a dog. She sleeps in her parents' bedroom so they can help her quickly when she suffers a seizure, and she already has a spot picked out on the floor next to her bed where the dog will sleep.
Now, she's trying to come up with a name.
The Ott parents expressed gratitude to the staff at Giana's school, Williams Elem entary, to local medical professionals and to the many friends that have become the family's support system in dealing with Giana's challenges.
"We get help everywhere we turn," Mary Ott said. "Without it we would have lost our minds."
They noted that even at such a young age, Giana's life is rich with good friends and community support.
And they explained how Giana has enriched their lives.
"It is very stressful, but we feel if she can do what she does to get through the day, why can't we," said Richard Ott. "She gives everyone hope. She's my best friend. She's amazing."
To reach Scott Stafford:
or (413) 496-6241.
On Twitter: @BE_SStafford
If you go ...
What: Pasta dinner benefit for Giana Ott
When: 1 to 5 p.m. Sunday, June 24
Where: ITAM Lodge, 93 Waubeek Road, Pittsfield
Donation: $10 for adults, $5 for children 7 to 13 years old, free for children 6 and under
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