When Hopewell resident Jodi O’Donnell-Ames’ late husband, Kevin O’Donnell, was no longer able to open a sugar packet or stand up on skis at 29 years old, she knew something was wrong. But it wasn’t until shortly after Kevin fell while riding a bike with their daughter Alina, then 2, in the baby seat that they began seeing a doctor.
After some consultations and tests, Kevin was ultimately diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects cells in the brain and spinal cord.
“I remember the doctors told us to go home and enjoy our time together — and that it would be short,” O’Donnell-Ames said.
Throughout O’Donnell’s battle with ALS, the progressive disease made everyday, simple tasks much more difficult.
“As the cells are dying, muscles [become atrophied] and the connection is lost; you can’t do a simple thing like pick something up or blink, and eventually breathe, walk, speak, digest. All those things take muscles,” O’Donnell-Ames said. “And so what happens is, typically, the person diagnosed with ALS has to leave their job, the person who’s their partner has to leave, or if they’re well-off enough financially, they can hire someone to assist. Every single thing you do each day is affected, everyday activities such as dressing, eating, bathing, all those things need assistance.”
O’Donnell-Ames lost her husband to ALS in 2001, and in 2007, she began to reach out to families also affected by the disease.
Her current husband, Warren Benton Ames, lost his wife Tina to ALS in 2000, and O’Donnell-Ames began sending free copies of Tina’s book “What Did You Learn Today?” to children whose parent has ALS. The book details the progression of ALS through the eyes of young children.
“We ordered 3,000 copies and I started sending them out and saying, ‘I’m here, I’ve raised three children and if I can be of help, here’s a free book,’” O’Donnell-Ames said.
This effort inspired O’Donnell-Ames to form the non-profit Hope Loves Company, which provides support and nationwide weekend-long camps, free of charge, for children from the ages of 6 to 21 who have a parent suffering from ALS.
On May 20, the organization completed the sixth camp in New Jersey, making it the 16th camp nationally.
“The camps started because we had a Family Fun Day,” O’Donnell-Ames said. “We got families together in the tri-state area who were facing ALS and then families were like, ‘This would be great if we could do this for a whole weekend.’”
By mixing common camping activities — rock climbing, fishing, hiking and canoeing — and support group sessions, the campers are able to meet and connect with other children who are going through the same hardships.
“Because ALS is a rare disease, a lot of the children never meet anybody else who is in the same situation — who has a father or mother who slowly can’t walk or talk, who’s communicating with eye gaze. So, we keep bringing the camp to other states,” said Laurie Kolano, executive director of Hope Loves Company and grief counselor for the Princeton non-profit Good Grief.
Hope Loves Company currently holds camps in New Jersey, Massachusetts, Indiana, California and Florida, and have plans to expand to Chicago and Dallas.
The Hope Loves Company mission has recently extended to Iceland, where the team traveled with nine campers to meet with members of the Icelandic ALS Association last year. The journey is featured in a Hope Loves Company documentary, which will premiere at the New Hope Film Festival in the New Hope Arts Center on July 21.
Cara Haggerty, a Hope Loves Company team member whose boyfriend’s father died of ALS last January, attended her first camp last month. She chaperoned an 8-year-old girl whose father died of ALS when she was 3.
“Not only was it fun to watch her do the activities, but she overcame her fears,” Haggerty said. “She said she wasn’t a fan of nature and then decided to do a nature walk in the rain, and there was a giant swing and she was afraid of it at first, debating back and forth about going on.”
Kolano swiped through an iPad with photos from last month’s camp, including one of a boy named Niall. He left last year’s camp to attend his mother’s funeral, Kolano said, and the other campers formed a line to give him a hug before he left.
“This year, after he did archery, he said that it was his favorite activity because he felt that when he released the arrow, he was releasing all of his stress too,” she said. “Every activity to resonates with different children.”
Kolano said that the camps allow the children — who often become caregivers for their loved one suffering from ALS — to “be kids again, laugh and have fun,” even if it’s just for a weekend.
Beyond the camps, Hope Loves Company sends care packages to children who may not be able to attend. Currently, the team is working on Hugs of Hope pillows — pillows made from the shirt of the child’s loved one who has passed from, or is still battling, ALS.
When the children graduate out of the camp, O’Donnell-Ames said, they are able to return as volunteers or through the organization’s Young Ambassadors Program.
“It’s spreading awareness, being an example at camp, helping us with our events and to come speak at events and share their experience,” O’Donnell-Ames said.
One ambassador, Mackenzie Anderson, lost her mother Susan Anderson to ALS, and she and her brother worked to develop a scholarship.
“[They] were instrumental in helping us create an ambassador program and get things started. They wanted to get involved as much as possible,” O’Donnell-Ames said. “The year that Susan passed away, with the donations, we thought it would be a nice tribute to put towards that scholarship in her memory.”
The Hope Loves Company mission is unique, as they are the only organization doing this kind of work to help benefit children.
Those at Hope Loves Company agree that the children they impact form a community, allowing them to understand what each of them are going through, all in a safe environment.
“That’s the most amazing thing about it,” Kolano said, “the community and the connections these children make. It gives them support going forward, they stay connected even after camp has ended. It normalizes the situation they’re in.”