Jodi O'Donnell-Ames Helps Children Who Have Parents Battling ALS

"I asked myself how can I use my negative experiences in a positive way, so I can almost justify all that had happened," she tells PEOPLE

Photo: Keiren O'Donnell Dunfee

In 1995, Jodi O’Donnell-Ames’ husband Kevin O’Donnell, then 30, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease. Her first thought was how to share the news with their 2-year-old daughter Alina.

Over the next five-and-a-half years, his diagnosis became more aggressive, and Alina started to notice her dad wasn’t like other kids’ dads.

O’Donnell-Ames, a 49-year-old massage therapist from Titusville, New Jersey, searched for the right way to tell her daughter that her father’s sudden lack of coordination and inability to even open a sugar packet wasn’t just a temporary problem – it was terminal.

“My husband was pretty much on the same level as my toddler when he passed away,” she tells PEOPLE.

When her husband died in 2001, O’Donnell-Ames knew she had to find a way to help others who face the same tragedy with their children as witnesses.

In 2007, she created Hope Loves Company, a non-profit organization that provides resources to families coping with ALS and ways for parents and grandparents to tell their children and grandchildren about the process.

“I started putting my name out there and saying, ‘If you’re going through this, I’m here and I can listen and help,’ ” O’Donnell-Ames tells PEOPLE. “I asked myself how can I use my negative experiences in a positive way, so I can almost justify all that had happened.”

The organization sends care packages that include informational books, a toy and a card to children, and they throw “family fun days” at least once a year. The biggest get-together is a free event at a camp, which hosts children ages 6 to 21 with parents suffering from ALS.

The fourth annual camp event is the weekend of May 29 at Fairview Lakes YMCA in Stillwater, New Jersey. The three-day weekend includes activities, meals and lodging – all paid for by HLC.

“It is just a really incredible experience for the kids to bond with other kids who also have a parent in their home that is declining rapidly and is very, very sick,” says Linda Cassidy, HLC vice president and camp director.

Activities include yoga for stress relief and team building exercises such as rock climbing and zip lining.

“When the children first come, they’re all a bit nervous and wondering if they’re going to fit in,” Cassidy says. “But by the end of camp, the kids don’t want to leave.”

Melissa Irvine of Preston, Connecticut, attended the camp last fall with her three daughters and husband Rob, 39, who was diagnosed with ALS in January 2011.

“It was amazing to be in a room of children that are going through the same thing my children are going through, and they immediately all got along,” Irvine tells PEOPLE. “It was nice that they didn t have to explain the situation about their parents having ALS. It was just understood.”

Irvine says her three daughters – Jenevieve, 8, Julia, 10, and Jillian, 13 – have all stayed in touch with the friends they’ve met at camp.

And Irvine made a friend of her own – O’Donnell-Ames.

“Getting to talk to another wife, another mother who has gone through what I’m experiencing now is almost like a sisterhood,” she says. “The minute I wrote to her, she responded immediately. It’s almost as if I had known her for a long time.”

The HLC founder is now married to Warren Ames, whom she met in 2002 at an ALS Hope Foundation family fun day. Ames lost his wife Tina to ALS in 2000 and has two children Nora, 24 and Adam, 21.

Tina wrote the children’s book, What Did You Learn Today?, a book that O’Donnell-Ames was giving out to attendees at the family day.

“We are all united in this hope and this journey and understand each other on a greater level,” O’Donnell-Ames says of her family.

O’Donnell-Ames also went on to write her own book, The Stars That Shine to help children who live with a disabled or terminally ill parent.

She says she hopes for HLC to continue to grow and reach more people who are in need.

She even puts her own cell phone number on the HLC website so she can immediately provide assistance to anyone who calls.

“A voice of someone who understands what you’re going through and can sympathize and provide guidance, is the easiest thing we do,” O’Donnell-Ames says. “When you realize you’re not alone, it makes you feel more capable because you know other people are doing it, too.”

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