Jodi O’Donnell-Ames had never heard about ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease) until 1995 when her late husband, Kevin O’Donnell, was diagnosed at the age of 30.
In the six years between Kevin’s diagnosis in 1995 and his death in February, 2001, O’Donnell-Ames was a loving caregiver to Kevin. She was Kevin’s arms and legs when he became paralyzed, she read his lips when he needed to communicate, and was his voice (after losing the ability to speak after being vented) and he could no longer advocate for himself and other people battling the disease.
Jodi, and her daughter Alina (then age 8) have continued advocating in Kevin’s memory. Today, ALS is still a terminal illness with no known cause or cure. It affects 30,000 Americans and most patients have children.
Since Kevin’s passing, Jodi has spent much of her life putting her ALS experience to use by helping others. Those efforts culminated in the 2012 formation of Hope Loves Company, a nonprofit organization with the mission to provide emotional and educational support to children and young adults who had or have a family member living with ALS. The organization’s marquee event is its Camp HLC, where young people from around the region can share their feelings with counselors, do team-building exercises and art therapy, and perhaps most importantly spend time with other young people who are going through the same things. There is a Camp HLC in New Jersey in May and Mercer County families have attended.
In 2003 O’Donnell-Ames married widower (also due to ALS), Warren Ames, and became step-mother to his children Nora and Adam. Warren’s late wife, Tina Ames, wrote a children’s book, “What Did You Learn Today?” about ALS. The couple met because of Tina’s book. The new family moved to Titusville and all three children went through the Hopewell Valley school system.
While raising three children, all of whom had lost a parent to ALS before the age of 11, the idea of Hope Loves Company came to mind.
This holiday season and always, Hope Loves Company needs your help! They need gift cards, camp sponsors and volunteers. Please check out their website and share their Today Show piece with others to help bring awareness to this unique non profit. http://www.today.com/parents/children-parents-als-get-support-counseling-camp-hope-loves-company-t95501
HLC sends Hugs of Hope care packages to the children and grandchildren of PALS, provides free books, free camps, and offers advice to parents on how to start the ALS conversation with their children. Jodi wrote The Stars that Shine in 2013 and now has a second book, “Someone I Love Has ALS,” published by People Tested Publishing. Both books are available on Amazon.