B y Krystle S. Morey

Like any other 9-year-old, Shaylah Shattuck loves reading books and listening to music, especially “Shoop” by Salt-N-Peppa. But much of the time that a typical youngster would spend watching cartoons and playing with building blocks has been taken up by doctor’s visits and genetic testing.
Shattuck, of Granville, has a neurogenetic disorder that stunts her growth, but doctors and specialists have, for the past nine years, struggled to determine a diagnosis. That’s why her family and friends are hosting a Dancing for a Diagnosis fundraiser this weekend.
The Zumbathon-style charity event is set for Saturday, Sept. 24, from 2-4 p.m. at Veterans Memorial Park in Granville and will consist of 90 minutes of Zumba dance instruction, a bake sale, raffles and more.

Shaylah Shattuck

Shaylah Shattuck

Proceeds will help pay for genetic testing that will hopefully help medical professionals reach a verdict.
“I want to have an idea of what to expect in the future… if she is going to live to be 50 or 60 or if her life is going to be cut short,” said Shattuck’s mother, Tonya Shattuck.
Shattuck will turn 10 in March, but she is only about the size of a three-year-old. She doesn’t walk or talk, and she didn’t learn to crawl until she was three. She goes to The Prospect School in Queensbury, a not-for-profit organization which offers multi-faceted services for at-risk and developmentally disabled individuals.
“She does not grow like an ‘average’ child,” Tonya Shattuck said.
The only determination doctors have been able to make is that part of Shattuck’s growth issue is due to microcephaly, a birth defect that means her head is smaller than other children who are the same sex and age.
“But that’s not a diagnosis,” Shaylah’s mother said.
Shattuck takes hormones daily to help with her growth, but insurance has limited its contribution for further testing and treatments. Just the bloodwork she requires costs more than $5,000.
“They refuse to help us because of the cost,” Tonya Shattuck said. “And yes it’s true that maybe a diagnosis won’t change anything, but it may give us a little bit of insight on what her future might hold.”
“She has been tested for so many (neurogenetic disorders), but they have all come back negative,” she said. She added that determining a diagnosis will allow her to connect with other parents who have children with similar challenges.
Tonya Shattuck is also interested in a diagnosis to find out if her eldest daughter Abby, 13, will face complications if she someday decides to have children.
“As her mother it does break my heart that they (the insurance company) get the final say in what is best for my daughter, but I also know that’s how this world works now,” Shattuck said.
A Zumba fundraiser is perfect for Shattuck because she absolutely loves music.
“Her hands go crazy and she rocks back and forth,” her mother said. “It’s very appropriate for her.”
The Dancing for a Diagnosis Zumbathon event will be led by licensed Zumba instructor Amanda Speciale.
Speciale, a native Granvillian, teaches Zumba at ABC Sports and Fitness in Latham. She is also Shattuck’s second cousin.
“She is so happy, and she is such a sweet little girl,” Speciale said of Shattuck.
Zumba instruction will be broken into three 30-minute sessions. Zumba is an aerobic fitness program featuring movements inspired by various styles of Latin American dance. There is no Zumba or dancing experience required. Participants should wear comfy clothes with sneakers.
“As long as you are moving and having fun that’s all that matters,” Speciale said.
“Even if you don’t want to dance, come, donate and watch… an event you won’t forget,” she added.
Dancing is included in the admission price: $10 for adults. Kids attend free. Raffle tickets and food items will be available at an additional cost. Raffle tickets are $1 each or 5 for $3, 10 for $6 and 15 for $10.
Raffle items include gift certificates and gift baskets from local businesses. Gemini Fitness and Fred’s Pharmacy in Granville had already donated raffle prizes.
“All of the proceeds that are raised at the event, 100 percent, are going to go right to Shaylah,” Speciale said. “…so she will be able to maintain and possibly obtain new services where they can actually find out long-term wise what’s in store for her.”
Attendees are encouraged, but not required, to wear yellow to raise awareness for microcephaly. The birth defect’s national awareness day is Sept. 30.
Interested volunteers or local organizations or businesses interested in donating raffle items should contact Speciale via email at [email protected]
“I cannot wait to pull this town together for an amazing event,” Speciale said.

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