In 2008, in the midst of raising three teens, all of whom lost a parent before the age of 10, the name came to me: Hope Loves Company.
I had spent 40 something years knowing that misery loves company. There were many times that I lived that example. But as I wrote down the words Hope Loves Company, I reflected on what more than four decades of life had revealed to me: focusing on hope, rather than misery, was far more beneficial to the human spirit. To my being. To my children.
Today, Hope Loves Company is a Hopewell-based nonprofit organization. Its mission is to provide educational and emotional support to children and young adults who had or have a loved one with ALS.
I first learned about ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease) in 1995 when my late husband, Kevin O’Donnell, received the horrific diagnosis. ALS is a terminal illness with no known cause or cure. There are currently 30,000 Americans battling the disease. Kevin was diagnosed in May — fittingly, because May is ALS Awareness Month. He was 30 when he received this death sentence of 3 to 5 years. Our daughter Alina was two.
Our world as we knew it turned black. Within a year, Kevin was wheelchair-bound. Then he relied on a feeding tube and eventually, a ventilator. He battled ALS like a superhero and his journey humbled everyone who had the pleasure of knowing him. Kevin passed away five years after his diagnosis, paralyzed and speechless.
Grief is powerful, and it zapped me of joy for many years after Kevin’s passing. To survive, I had to learn how to use that grief to benefit others. I decided to continue my battle with ALS in Kevin’s memory. I wrote, advocated and reached out to patients. Then I got a job working with ALS families. While working as the director of communications at the ALS Hope Foundation, Philadelphia, I met my current husband, Warren Ames, and became the proud mother to his young children Nora and Adam. Warren had lost his wife, Tina, to ALS as well.
I observed the enormous losses my children were facing and vowed to make a difference. But how? I began from my home with only strong coffee to help me. I reached out to ALS families with children. I began by opening my heart and offering my phone number.
In 2012, in memory of Kevin and Tina and our children, I founded Hope Loves Company. It’s the only nonprofit of its kind, providing free books, camps, Hugs of Hope care packages and more to the children and grandchildren of ALS patients. We help children all over the country.
In four short years, we have established Camp HLC in New Jersey, Indiana, Florida, Massachusetts and California. Camp HLC is a three-day retreat. It’s an opportunity for kids to have fun, to be challenged through team-building exercises and meet others who are in the same situation. Camps are provided free by Hope Loves Company and its sponsors.
Although the families we serve are grateful to us for establishing this one of a kind nonprofit, I thank them for the gifts I continuously receive. In witnessing heroes each day, I have evolved. There is less misery in the small stuff. The little joys are big joys. The company I keep is full of hope.
Jodi O’Donnell-Ames has lived in Titusville since 2003. For more information visit, hopelovescompany.org.