In September of 2019, only two weeks before the annual ALS Walk for Life, Jenny Fortner, of Tinley Park, and her siblings quickly formed a team – Diane’s DeFeeters – to honor their mom, Diane Costello. Inspired by Diane’s courage and perseverance, the team of 40 relatives and friends began fundraising and found themselves overwhelmed by the generosity of others. Collectively, the team raised $27,000 for the Les Turner ALS Foundation. This year, members of Diane’s DeFeeters are determined to raise even more.
Jenny Fortner is a Mother McAuley High School graduate, and her brothers attended Marist High School; her son, Joey, currently attends Marist, and her husband, P. Jay Fortner, is a teacher and football coach at the school.
While the ALS Walk for Life traditionally is held at Soldier Field, this year’s event will be virtual. Participants will host their own socially distanced events, fundraise for the Les Turner ALS Foundation and walk in their communities during the weeks leading up to event day. At 11 a.m. on Saturday, Sept. 26, emcees Phil Schwarz of ABC7 Chicago and Melissa McGurren from “Eric in the Morning with Melissa and Whip” on 101.9 THE MIX, along with special guests, will unite the ALS community in a Facebook Live event.
Since there is no specific test for ALS and symptoms can mimic other illnesses, making the diagnosis can be difficult. Many people eventually diagnosed with ALS report experiencing progressive symptoms for a year or more without knowing the cause. This was the case for Diane.
When she began having trouble walking long distances and experiencing weakness in her legs, she became concerned and sought medical advice. Along the journey to her diagnosis, one doctor speculated a back issue might be causing the weakness, a second doctor thought it could be a problem with her knee, while a third physician explained the issue likely was the result of medication side effects.
Diane, her husband, Mike, and their four adult children questioned these ideas and continually advocated for more information. In November of 2018, Diane was diagnosed with ALS at the Lois Insolia ALS Center at Northwestern Medicine.
Today, Diane’s legs have weakened, leaving her dependent on a wheelchair for mobility. She also uses a BiPAP machine for breathing support at night. In some cases, ALS impairs the ability to speak; Diane has recently begun to record her voice and upload audio files into a speech-generating device to use if necessary in the future. Despite the changes in her physical health, Diane remains upbeat and fulfilled through prayer, calls with friends and relatives, and teaching her nine grandchildren to read, cook, knit and play games via Zoom. Throughout all of this, she has especially enjoyed spending quality time with her husband and caregiver, Mike.
Guided by faith, family and friends, Diane faces each day with strength and positivity. She has started a daily Blessings Journal, recognizing all that is good in life, even during difficult times. After her diagnosis, Diane decided to re-frame her thinking around the letters “A-L-S” and associate them with “Almighty Loving Savior.” For Diane and her family, with God’s help, they will get through the challenges of living with ALS.
“The Les Turner ALS Foundation, the incredible doctors and nurses, and the larger ALS community have become our extended family and inspire us to give back through events such as the ALS Walk for Life,” said Jenny. “The Foundation’s team helps prepare us for what lies ahead with this unpredictable disease so that we can live in the moment and appreciate what we have.”
The walk team’s fundraising success depends on not only the adults, but also the younger generations who are encouraged to creatively honor Diane and fundraise for the cause. Several grandchildren are planning a trampoline marathon and a virtual free throw contest to raise money and awareness.
Since its inception in 2002, the ALS Walk for Life has raised more than $13 million for the Les Turner ALS Foundation. These funds support ALS research and clinical care at the Les Turner ALS Center at Northwestern Medicine and supportive services for people living with ALS and their families.
For more information, visitwww.ALSwalkforlife.org.