25 month old Noelle Jablonka is truly her parent's miracle baby. After six years of infertility, and four years of IUI and IVF treatment, she was the only one of 14 embryos to survive.
Her mom Jenny says the pregnancy was uneventful, and her labor though, long, pretty standard. However, when she was between three and five months old it became clear something wasn't quite right.
Noelle's demeanor was almost too easy, going and calm. She wasn't reaching for objects, or rolling over, milestones for her age group.
Eventually mom and dad noticed strange eye movements and her head dropping- which turned out to be seizures. Noelle was rushed to Yale where doctors ran tests that found she has lennox gastaut syndrome, a rare and severe form of epilepsy that gets progressively worse and has no cure.
Needless to say-- life changed forever.
Noelle's mom, Jenny Grace Jablonka said "many,many doctors appointments many many hospitalizations the medication and her trying to muddle through a day and put on a happy face even with a ton of medication she’s on the financial burden."
At 2 years old Noelle requires a feeding tube, often oxygen, and suffers from regular seizures. Another challenge-- fitting in.
"We sometimes feel excluded, not being able to do these fun things," said Jenny." The feeling of exclusion that you can’t partake the normal child activities that you dream about when having a child- that’s been challenging. So we’re just so grateful that they know we’re here."
Enter Amy Brenner.
Brenner owns two gyms for kids in the CT area, My Gym Children’s Fitness Centers in Orange and Fairfield.
She is spreading the word the word about the parent company’s national charity arm, My Gym Foundation and their #GivingTuesdayKids campaign. This year, Giving Tuesday falls on Tuesday, December 3.
My Gym Foundation fundraises for the purchase of life-changing medical equipment and assistive devices for children with disabilities.
" There are so many requests we get for people just to be able to have a chair where the child can sit with their siblings and play, or a cooling vest where a child who can’t regulate their own body temperature can actually go outside and swing on a swing," said Amy.
The goal of the foundation is to enhance the quality of life and improve the physical, cognitive, emotional, and social development of the recipients.
Through the company’s gifting program, they help special children acquire the confidence, self-esteem, and sense of well-being they need to lead more productive and rewarding lives.
This year Amy is sponsoring Noelle. The money raised will purchase a Firefly Friends Play Pak. This piece of equipment will help Noelle learn to sit up and engage in playtime.
" I’m excited just to have the opportunity to let her try," said Jenny. "It will allow her to feel included during circle time and so it might not even need to hold onto her anymore."
"How many people who are pulling for you who are praying for you-- you know you’ll get a message on social media from someone you never met saying for the last year they’ve done nothing but think about you and praying for you," said Stan Jablonka, Noelle's father. "The people that go out of their way to send stuff to us whether it’s just a simple note just to make us feel better, our coworkers at both of our jobs.
"Those are the things that keep you going those every day," added Stan. "Little things that people do for us, because without it I could see how people could give up. It’s tough but with everybody’s support it makes it a lot easier."
Starting Tuesday all 175 my gym locations across the country are going to be teaching children about charity and inclusivity.
Every class will accept donations and do a "sit up for kids challenge" to raise awareness about kids who cannot sit up by themselves.
Money raised will hopefully fund requests for specialty chairs for forty children nationwide.
LEARN MORE ABOUT NOELLE AND DONATE TO HER FAMILY HERE.
LEARN MORE ABOUT MY GYM FOUNDATION: