Amyotrophic lateral sclerosis, known informally as ALS or Lou Gehrig’s disease, is a debilitating and fatal condition. It destroys nerve cells in the brain and spine, eventually robbing patients of the ability to walk, speak, and breathe. Approximately 15,000 Americans have ALS, and they usually die within two to five years of diagnosis.
Many children and grandchildren of those with ALS become caregivers — and watching a loved one’s health deteriorate can be stressful and isolating. To provide relief to those family members, a New Jersey group has created a national network of camps to help them feel less alone.
The group, Hope Loves Company, is in its fifth year and offers free three-day camps for children who have or have had a loved one with ALS. The program began in New Jersey, but the demand was so great that it’s now established camps in Massachusetts, Florida, Indiana, and California.
Open to kids between 6 and 21, the camps provide a typical experience of rock-wall climbing, hiking, and bonfires, giving kids the opportunity to get away from it all for a weekend. But there is also time for yoga and music therapy, where campers learn strategies for dealing with the stress of caring for someone with ALS.
Founder Jodi O’Donnell-Ames said simply being around other children going through similar experiences can help them cope.
“There’s no other place that you will have that opportunity to possibly laugh and cry about the same story with a group of people at that same age,” she said. “That, in itself, is priceless.”
O’Donnell-Ames started the organization after she lost her husband to ALS and saw firsthand the impact his deteriorating health had on her young daughter, who was 2 when he was diagnosed. Her daughter was too young to comprehend fully what was going on, and because the disease is rare, there were few people with whom she could commiserate.
The camps bring young people such as her daughter together, giving them an outlet to express anxieties and fears.
“They feel less isolated and less alone,” she said.
She hopes to expand the number of camps in the coming years, with a goal of nine or 10 across the country. O’Donnell-Ames also hopes to acquire additional funding for programs and resources between camps. The camps are currently funded by a combination of individual donations and grants.
The next camp takes place in Florida in April, with another following in May in New Jersey.