Five-year-old Lily Parlier might just be the youngest lobbyist in the Capitol.
Soon, thanks to her, hospitals will test for spinal muscular atrophy when babies are born. It’s a rare genetic disease that she lives with, but since she wasn’t tested early on, her mom had to wait 11 months before she was diagnosed.
“The prognosis is so much better,” Tracy Parlier said. The interventions will be so much less. They will live, I don’t want to say normal lives, they will still be affected. But the kids that won’t be able to sit up or talk… they are walking or talking.
Those first few months are crucial, and could drastically change a child’s quality of life if treatment starts quickly. That’s why Lily and her mom teamed up with their local lawmaker to fight for the new tests. That passed in 2018, and after a couple years of waiting, representative Dan Swanson announced encouraging news on the house floor on rare disease day at the Capitol.
“My most recent conversation with IDPH, is that they are on track to make that July 1 date,” Swanson said.
Lily didn’t have the benefit of an early diagnosis. She now goes through multiple sessions of treatment per day.
But she fights through all of it, and always comes out the other side smiling.
“My sister asked me when she was diagnosed, don’t you say ‘why me why her,’” Tracy Parlier said. “I say no. Why not her? Who better to represent this awful disease than her. She is outgoing. She is beautiful. She is smart. She has a purpose.”
Representative Swanson honored Lily on the floor of the house on Wednesday.
He said that IDPH has already tested 5,000 children, and found one case of SMA.