Helping Hayley
Donation protected
Hayley has been diagnosed with a rare form of ALS. In 2009 researchers discovered that mutations on a particular gene can cause ALS Type 6 and a defect known as FUS gene defect, in particular, has been known to cause an extremely rare early-onset ALS in teenagers and young adults. ALS Type 6 follows a typical adult ALS prognosis from onset of first symptoms.
"How is Hayley doing?"
Considering all of the challenges she deals with on an everyday basis, her attitude and mental well-being are beyond phenomenal.
ALS has taken away her speech, ability to eat and drink by mouth and has considerably weakened her neck, shoulders and the muscles needed for breathing. Just think about losing these abilities for a moment and then ponder having to spend just one day not eating, drinking or speaking; then throw in toting around a machine and wearing a mask 24/7 to help you breathe and finally, factor in that you are only seventeen years old. It's pretty unfathomable, yet she lives this reality daily and still wakes up with a smile on her face and hugs to give.
The Steffen Family remains strong and are trying to enjoy each and every day. Thanks to all of you for your prayers, good thoughts and positivity...please keep them coming!
Hayley is a student at Kennedy High School; Amy works for Jefferson High School. The Steffen Family has strong, proud Bloomington ties.
As supporters of the Steffen Family, we are hoping to raise money to offset medical expenses and make life easier during this extremely challenging time.
"How is Hayley doing?"
Considering all of the challenges she deals with on an everyday basis, her attitude and mental well-being are beyond phenomenal.
ALS has taken away her speech, ability to eat and drink by mouth and has considerably weakened her neck, shoulders and the muscles needed for breathing. Just think about losing these abilities for a moment and then ponder having to spend just one day not eating, drinking or speaking; then throw in toting around a machine and wearing a mask 24/7 to help you breathe and finally, factor in that you are only seventeen years old. It's pretty unfathomable, yet she lives this reality daily and still wakes up with a smile on her face and hugs to give.
The Steffen Family remains strong and are trying to enjoy each and every day. Thanks to all of you for your prayers, good thoughts and positivity...please keep them coming!
Hayley is a student at Kennedy High School; Amy works for Jefferson High School. The Steffen Family has strong, proud Bloomington ties.
As supporters of the Steffen Family, we are hoping to raise money to offset medical expenses and make life easier during this extremely challenging time.
Organizer and beneficiary
Carrie Jarvis
Organizer
Minneapolis, MN
Amy Steffen
Beneficiary