LAKEWOOD, Ohio – Flu season can be particularly dangerous for 3-year-old Addilynne Shirey. She has a severe form of spinal muscular atrophy, a genetic disease affecting muscle strength and movement.
“She's very sassy. SMA - spinal muscular atrophy - we say actually stands for ‘so much attitude,’” said her mother, Amanda Shirey.
Addilynne's mom was told her daughter had just one year to live, so she left her job as a teacher to care for her. The family found hope in a clinical trial for a life-saving treatment, recently approved for market by the FDA.
“Usually they just see a regression, but with her she's actually getting stronger,” Shirey said.
While her mind is strong, the illness impacts her ability to breathe and swallow, and any virus such as influenza can have deadly effects.
Flu season is now keeping Addilynne out of preschool at Lakewood's Hayes Elementary, so her mom signs Addilynne online.
The school provided a Vgo robot that allows her to communicate with students and her teacher and take part in daily lessons.
Her mother controls the robot’s movements from home, and it accompanies the class, including trips to the gym for physical education.
“They interact with her. It’s as if she's there; if she's not there they wonder why. So it's just a great way to keep her as part of us and keep learning because she's a really smart girl,” special education teacher Chris Porochonski said. “The kids are young and so much more accepting of new things that happen in the classroom, so they adjusted to it pretty easily. I definitely feel like we'll be seeing more of this robot being used in the future.”
The Shireys, a family of six, are outgrowing their home. They have found such support in the Lakewood Schools and neighbors in their community that they want to stay, according to Shirey, but they could not find another house that could accommodate their family, including a first-floor bedroom and bathroom for Addilynne.
Currently, the family’s living room doubles as Addilynne’s bedroom, with special equipment and medical devices filling much of the house.
“She needs her own space; every child deserves a bedroom,” Shirey said.
A contractor who had offered to donate the work for an addition was exposed as a fraud.
“Emotionally it's been very difficult, and financially it's been very difficult,” Shirey said.
The family has set up a GoFundMe page to help raise some of the $60,000 cost of a renovation.