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Children of parents with ALS get support, counseling at Camp Hope Loves Company

The campers at Hope Loves Company all have family members with ALS, also known as Lou Gehrig's disease, and learn how to cope with being caretakers.
/ Source: TODAY

Just like many other camps, Hope Loves Company gives kids the chance to sleep in log cabins, eat in mess halls, play outdoors and spend hours developing lasting friendships.

But unlike most other places, these campers also pick up strategies for coping with the stress that comes from taking care of parents or other family members with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease.

“I love camp because it's really awesome, and you just know a lot of people are there for you when you talk about ALS,” said 10-year-old Zoe Mongiello, whose father is currently battling ALS and attended the weekend-long camp with her twin brother, Zach.

ALS is a debilitating disease that requires intense, around-the-clock care. Often times, a lot of that responsibility falls on the children of those with the condition. Hope Loves Company was created to help provide emotional and educational support to those young caretakers.

Hope Loves Company
Campers at Hope Loves Company, which helps children of parents with ALSTODAY

“The kids get the understanding that they are not alone, that someone understands how they feel, that someone knows what they're going through,” said Jodi O’Donnell-Ames, who started the non-profit organization after losing her husband, Kevin, to ALS.

“In 1995, my husband, who was 29 years old, started with symptoms of ALS and I knew nothing about it," she said. "Within five years, five and a half years, he was vented, feeding tube, paralyzed and speechless. And our daughter, Alina, was 2 1/2 when he was diagnosed and 8 when he passed.”

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Years later, O’Donnell-Ames met Warren Ames, whose wife also had died from ALS. They married and merged their two families.

“Very quickly I'm raising five people who are healing, and I thought, ‘When my children, who have all experience this great loss of a parent due to ALS, become adults, I will create an organization," O’Donnell-Ames said.

She kept that promise in 2012 when she launched Hope Loves Company, which provides its camps to children for free.

Hope Loves Company
A team-building activity at Hope Loves CompanyTODAY

During camp, kids cheer each other on during team-building activities. They also meet people just like them.

“I didn't know who else's parents had ALS, and when I came here, I was happy that I found people that had parents that have ALS,” said Emily Miller.

The children also attend group counseling sessions to help cope with scenarios many kids their age never have to endure.

“This camp has single-handedly changed my life,” said Mackenzie Anderson. “My mom passed away two months ago from ALS but when she was still going through this, coming here was a relaxing weekend that I didn’t get much of when my mom was going through ALS.”

Social worker Faith Saunders said the environment gives the children "a place just to be."

“Because some of these kids — most of them — this is a great opportunity for these kids to come together, to cry when they feel like crying, laugh when they feeling like laughing and just be in a safe place,” said Saunders.

Hope Loves Company

Hope Loves Company runs camps in New Jersey, Indiana and Massachusetts but wants to expand to more states to help additional children.

“After each camp, it is so clear to me that this is all meant to be. And I don't want to say I was meant to lose my husband, but I do know that I was supposed to use that difficulty to help others,” O’Donnell-Ames said. “And so each camp just is a reminder, and it's a reason to continue this fight to grow.”

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