In memory of Hayley Steffen
someone we've lost to ALS
It was incomprehensible that our beautiful daughter was handed a death sentence at the age of 16.
Our hope is to raise awareness that ALS does not discriminate. It does not care about your age, your gender, your race or your future dreams. It devastates families in the blink of an eye. Our family has experienced this devastation firsthand.
Our beloved daughter, Hayley, was diagnosed with bulbar onset ALS in April 2017, only a few short weeks before her 17th birthday. We were given the devastating news that Hayley had a mutation in the FUS (fused in sarcoma) gene. Most FUS mutations are responsible for an extremely aggressive juvenile onset form of ALS. Hayley was told that this was a 100% fatal disease and there were no curative treatments available to her. It was incomprehensible that our beautiful daughter was handed a death sentence at the age of 16.
She went from being an active high school student who had recently received her driver’s license to being robbed of her speech, her ability to eat & drink and her ability to breathe without 24/7 assistance all due to this horrific disease. Instead of spending the fall of her junior year in high school with friends, Hayley began in-home hospice and gained her freedom from ALS in March 2018, just a few months shy of her 18th birthday.
As a parent, it is beyond heartbreaking to see your child fight this disease, to never hear their sweet voice say “I love you” as this ability is stolen from them. Therefore, WE need to be their voice to advocate for funding and for effective treatments.
Before Hayley’s diagnosis, we had no idea ALS could affect anyone so young…but sadly it does attack children, teenagers and young adults.
Hayley blessed us with joy every day of her life. She taught us that no matter how terrible a day or situation can be there is always a reason to be positive, persevere and give a thumbs up. We miss her terribly and are honoring her memory with a website,
www.curepediatricandjuvenileals.org, created to bring specific awareness of pediatric and juvenile ALS.