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

October 6, 2016 - als

In 1995, Jodi O’Donnell-Ames’ father Kevin O’Donnell, afterwards 30, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), a on-going neurodegenerative disease. Her initial suspicion was how to share a news with their 2-year-old daughter Alina.

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

O’Donnell-Ames, a 49-year-old massage therapist from Titusville, New Jersey, searched for a right approach to tell her daughter that her father’s remarkable miss of coordination and inability to even open a sugarine parcel wasn’t only a proxy problem – it was terminal.

“My father was flattering most on a same turn as my toddler when he upheld away,” she tells PEOPLE.

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

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

“I started putting my name out there and saying, ‘If you’re going by this, I’m here and we can listen and help,’ ” O’Donnell-Ames tells PEOPLE. “I asked myself how can we use my disastrous practice in a certain way, so we can roughly clear all that had happened.”

The organization sends caring packages that embody informational books, a fondle and a label to children, and they chuck “family fun days” during slightest once a year. The biggest get-together is a giveaway eventuality during a camp, that hosts children ages 6 to 21 with relatives pang from ALS.

The fourth annual stay eventuality is a weekend of May 29 during Fairview Lakes YMCA in Stillwater, New Jersey. The three-day weekend includes activities, dishes and stay – all paid for by HLC.

“It is only a unequivocally implausible knowledge for a kids to bond with other kids who also have a primogenitor in their home that is disappearing fast and is very, really sick,” says Linda Cassidy, HLC clamp boss and stay director.

Activities embody yoga for highlight service and group building exercises such as stone climbing and zip lining.

“When a children initial come, they’re all a bit shaken and wondering if they’re going to fit in,” Cassidy says. “But by a finish of camp, a kids don’t wish to leave.”

Melissa Irvine of Preston, Connecticut, attended a stay final tumble with her 3 daughters and father Rob, 39, who was diagnosed with ALS in Jan 2011.

“It was extraordinary to be in a room of children that are going by a same thing my children are going through, and they immediately all got along,” Irvine tells PEOPLE. “It was good that they didn t have to explain a conditions about their relatives carrying ALS. It was only understood.”

Irvine says her 3 daughters – Jenevieve, 8, Julia, 10, and Jillian, 13 – have all stayed in hold with a friends they’ve met during camp.

And Irvine done a crony of her possess – O’Donnell-Ames.

“Getting to speak to another wife, another mom who has left by what I’m experiencing now is roughly like a sisterhood,” she says. “The notation we wrote to her, she responded immediately. It’s roughly as if we had famous her for a prolonged time.”

The HLC owner is now married to Warren Ames, whom she met in 2002 during an ALS Hope Foundation family fun day. Ames mislaid his mom Tina to ALS in 2000 and has dual children Nora, 24 and Adam, 21.

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

“We are all joined in this wish and this tour and know any other on a larger level,” O’Donnell-Ames says of her family.

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

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

She even puts her possess dungeon phone series on a HLC website so she can immediately yield assistance to anyone who calls.

“A voice of someone who understands what you’re going by and can sympathize and yield guidance, is a easiest thing we do,” O’Donnell-Ames says. “When we comprehend you’re not alone, it creates we feel some-more able since we know other people are doing it, too.”

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