Jodi O’Donnell-Ames might never have become a massage therapist if her late husband, Kevin O’Donnell, hadn’t been diagnosed with ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease).She would never have founded her nonprofit, Hope Loves Company, either.

But she found, as Kevin gradually succumbed to the neurological disease, that she could give him comfort by massaging his head, his face, his hands. The bonding those sessions engendered was so powerful that she eventually went to go to school to become trained in the profession and uses her skills to help PALS (People living with ALS), today.

In the six years between Kevin’s diagnosis in 1995 and his death in February, 2001, O’Donnell-Ames dealt with the overwhelming demands put on those who care for loved ones with the disease. They had a toddler, Alina, who needed care on top of the challenges brought on by ALS.

The difficult yet rewarding years of taking care of Kevin — feeding him, bathing him, dressing him, remaining by his side during lengthy hospital stays — will be with her always.

In the years since, she has spent much of her life putting that experience to use by helping others. Helping was healing. Those efforts culminated in the 2011 formation of Hope Loves Company, a nonprofit organization whose motto is, “Because if you live with ALS, so does your family.”

The mission of Hope Loves Company is to provide emotional and educational support to children and young adults who have family members 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 one in New York in October, and hopefully with additional funding, more to come.

In 2003 O’Donnell-Ames married a 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.

Jodi proceeded to raise three children, all of whom had lost a parent before the age of 11, and knew that they needed resources beyond what she and her husband could provide. That’s when HLC came to mind. No one was filling that need, so once her kids were adults, she did something about it.

She started by creating a website offering copies of Tina’s book, then eventually her book, “The Stars That Shine,” to patients who wanted help explaining ALS to children. To her surprise she received orders from around the country. Demand for the book played a role in the formation of Hope Loves Company.

Today HLC sends Hugs of Hope care packages to the children and grandchildren of PALS, provides free books, free camp, and offers advice to parents on how to start the ALS conversation with their children. Jodi now has a second book, “Someone I Love Has ALS,” published by People Tested Publishing. Both books are available on Amazon.

Facebook Comments