GALESBURG, Illinois - This spunky little two year old, can turn her wheelchair on a dime, you'd never know that Lily Parlier is battling a life-threatening disease.
"She was diagnosed with Spinal Muscular Atrophy type 2 and one in 50 people are carriers," said Tracy Parlier, Lily's mom.
Lily was diagnosed with SMA in June of 2016, the disease is the number one genetic cause of death for infants today and it's something this family never saw coming.
"I just remember crying at so many birthday parties, what's wrong with her, why can't she and the diagnosis was terrifying," said Parlier.
For Lily, it's taken away her ability to walk, affects how she eats and breathes.
"We actually have a lot of equipment that we use, she has a cough assist machine it's a mask she puts on it pushes air in and pulls air out so she could do a productive cough," said Parlier.
Back in Januray, Lily started receiving spinraza, a new treatment that was approved by the FDA in December of 2016, it has a huge price tag, $125,000 per dose and so far, it's made her stronger.
"Crawling is just a new development for her, she does continue to push though, she knows that she gets around differently and she's okay with it," said Parlier.
This family is pushing for an Illinois bill that would require the department of public health to provide all children to be screened for SMA in their first year of life.
"If babies could be screened at birth and it's detected they can start treatment and it will change their lives," said Parlier.
For Lily and her family every day is a new challenge with this disease.
"Who better to represent this horrible disease than Lily she's gonna touch a lot of lives," said Parlier.
The family has many medical expenses and on Saturday, October 28th they will be having their annual fundraiser, Longevity for Lily Trivia Fundraiser.
It will be held at 1556 E Fremont St, Galesburg, Illinois 61401, doors open at 5 p.m.
If you can't make it, they will be accepting donations to their GoFundMe page.
You can also follow Lily's journey on Facebook at Longevity for Lily.
