The Register Citizen (Torrington, CT)
Family seeks votes for Lanaya
Disabled child’s parents hope to win a bike on Facebook
TORRINGTON — Lanaya Morris is 11 years old and loves to play with her little brother Jamison, spend time with her parents, Kirsten and Jason Viarengo, and take dancing lessons.
Her favorite foods are chicken nuggets and french fries. She also enjoys bike-riding, but she’s grown out of the tricycle she’s been using and needs a new one.
Lanaya has 2Q37 deletion syndrome, a rare genetic disorder that affects her physical and mental development. She is small. Her vision isn’t perfect. She has had many surgeries since the age of 2 on her eyes and ears. Until she began attending school, she didn’t talk at all.
Simply explained, 2Q37 deletion syndrome, according to dovemed.com, means that a child is born missing their chromosome 2, a gene that affects all levels of development throughout the body. Symptoms, according to dovemed, can include facial abnormalities, low muscle tone, congenital heart and kidney abnormalities, proper growth, intellectual disabilities and autism spectrum disorders.
But thanks to her parents’ efforts and her education at Oak Hill, a special needs education program at the Ann Antolini School in New Hartford, the little girl is doing well. Her speech ability has improved and she is able to take part in activities that were at one time impossible. One of those activities is bike-riding, and her mother has entered her in a contest to try to win one for her.
Lanaya wasn’t diagnosed with the disorder until the age of 21⁄2. “Because it’s so
rare, every day is a guessing game for us,” said Kirsten Viarengo, a lifelong resident of Torrington who is employed at LARC as a life skills coach. “It affects everything — her speech, hearing, motor skills ... when we found out what she had, there were only 100 reported cases, worldwide. She didn’t talk until she was almost 31⁄2 .”
Once she was enrolled in Oak Hill, however, Lanaya began to grow.
“We had no idea what to expect from her at all,” Viarengo said. “But she talks now, she does really well. She has slow muscle tone, so she doesn’t move as fast as other kids do, but she’s doing really well.”
Bike riding with the kids in the neighborhood is something Lanaya loves to do.
“She has outgrown a normal tricycle, that she rides here at home, but she rides a special bike at school that’s made for children with slow development,” her mother explained. “We want one for her to use at home, but they run between $1,400 and $2,400 — they’re pretty expensive.
“Having the bike will help her gain independence and muscle tone, and she’ll be able to play with the kids in the neighborhood and ride bikes outside,” Viarengo said.
Viarengo belongs to a special needs group on Facebook, and learned about a contest called the Great Bike Giveaway last year. She was too late to enter in 2018, but watched the page and registered Lanaya again this year. To win, they must either raise money or get votes. “All I’m asking for is votes,” Viarengo said. “We were in first place, and now we’re in second place. The deadline is Feb. 27, and they’ll announce the winner on Feb. 28. I really would like her to win that bike.”
Anyone can vote for Lanaya to win the bike at https://bit.ly/2DCFnDJ, or go to www.greatbikegiveaway.com and enter Kristen Nicolle Viarengo in the search bar, where Lanaya’s contest page will appear.
Viarengo tried to buy one of the bicycles last year, but it turned out to be a scam.
“In December, a woman in California was selling a bike on Facebook, like the one we needed and she said it would be $200,” Viarengo said.
“I saved and saved, and finally a friend helped me out so I could send the money,” she said. “I sent it, and I wasn’t able to get in touch with that woman. She took my $200 for a bike she never had. Luckily, PayPal reimbursed us, but I was devastated.”
The bike is a Rifton Adaptive Tricycle, which provides “reciprocal exercise” to help the rider build muscle and strength.
If they aren’t able to get the bike this year, Viarengo will try again. Meanwhile, her daughter will continue to grow and thrive at Oak Hill, she said.
“She loves music — we go to the Coe Memorial Park concerts in the summertime,” she said. “Before she could talk, she could sing a song. Everything in the world to her is about music. She loves it.”
Lanaya began school at East School’s preschool program. Attending Oak Hill was the school district’s recommendation, Viarengo said.
“She’s attending Oak Hill because she needs one-on-one with everything — physical therapy, speech and occupational therapy — she’s on the autism spectrum, and that’s what she needs,” she said. “Torrington can’t provide that, and they helped her by sending her to Oak Hill. At Oak Hill, Lanaya is integrated. She gets classroom time. She’s not isolated. She’s with other kids, special needs and regular kids.”
Her child’s prognosis is good, her mother said.
“There are different levels of 2Q37 deletion syndrome. Some are severe with fatal outcomes, and some are minor. Lanaya’s almost in the middle. Some kids have heart defects, and Lanaya had a heart murmur, but it closed, and now she’s OK,” Viarengo said.
“Developmentally, she’s around 3 or 4 years old. But she’s come a long way since we started Oak Hill. She can express herself. She does well with kids her age.”
That’s why the bike giveaway is so important to the Viarengo family: It will help Lanaya grow.