25-month-old Noelle Jablonka is the wonder baby of her parents. After six years of infertility and four years of IUI and IVF treatment, she was the only one of 14 surviving embryos.
Her mother Jenny says the pregnancy was uneventful and her contractions long, fairly normal. But when she was between three and five months old, it became clear that something was wrong.
Noelle's appearance was almost too relaxed, calm and relaxed. She did not pick up items or roll over milestones for her age group.
Finally, mom and dad noticed strange eye movements and her head fell down – which turned out to be seizures. Noelle was taken to Yale, where doctors performed tests that found her suffering from Lennox-Gastaut syndrome, a rare and severe form of epilepsy that is increasingly getting worse and has no cure.
Needless to say, life has changed forever.
Noelle's mother, Jenny Grace Jablonka, said, "Many, many medical appointments, many hospitalizations, the meds, and they're trying to mess up a day and get a happy face, even if she has a lot of medication for the financial burden."
At the age of 2, Noelle needs a nasogastric tube, often oxygen, and suffers from regular seizures. Another challenge – to adapt.
"Sometimes we feel excluded because we can not do those funny things," Jenny said. "The feeling of exclusion that one can not participate in the normal activities for children that one dreams about when having a child – that was a challenge." I'm just so thankful that they know we're here. "
Amy Brenner comes in.
Brenner has two gyms for children in the CT area, My Gym Children's Fitness Center in Orange and Fairfield.
She spreads the word about the parent company's national charity, the My Gym Foundation and her #GivingTuesdayKids campaign. This year, Giving Tuesday falls on Tuesday, December 3rd.
My Gym Foundation collects donations for the purchase of life-changing medical equipment and aids for children with disabilities.
"There are so many requests that people should just have a chair where the child can sit and play with their siblings, or a cooling vest on which a child who can not regulate his body temperature can actually walk outside and swing on swing, "said Amy.
The aim of the foundation is to improve the quality of life and the physical, cognitive, emotional and social development of the recipients.
Through the company's gift program, they help special children gain the self-confidence, self-esteem, and well-being they need for a more productive and rewarding life.
This year, Amy Noelle sponsors. The money collected will buy a Firefly Friends Play Pak. With this equipment Noelle learns to sit up and play.
"I'm excited just to have the opportunity to let her try," Jenny said. "It will allow her to feel trapped in the circle's time, and so she may not even need to hold on to it."
"How many people who pull for you, who pray for you – you know that you're getting a message on social media from someone you've never met in the past year, they were just thinking of you and praying for you "said Stan Jablonka, Noelle's father. "The people who go out of their way to send us stuff, if it's just a simple note, to make us feel better, our people in both jobs.
"These are the things that keep you going every day," Stan added. "Small things that people do for us, because without them I could see how people could give up, it's difficult, but with everyone's support it will be a lot easier."
As of Tuesday, all 175 of my gyms nationwide will teach kids about charity and inclusiveness.
Each class receives donations and organizes a Sit-up for Kids Challenge to raise awareness of children who can not sit alone.
The money raised will hopefully finance requests for special chairs for 40 children across the country.
LEARN MORE ABOUT NOELLE AND SPEND YOUR FAMILY HERE.
LEARN MORE ABOUT MY GYM FOUNDATION: