INGLESIDE – It’s quiet in the Leibow Lodge at Ingleside’s Camp Nageela Midwest.
A light drizzle is falling outside from beneath a blanket of slate gray clouds. Kristin Rankin and her husband, Kevin Kribs, sit side-by-side near the fireplace and all discussion ceases as the door swings open and their three girls – Tess, Paige and Laney – come barreling into the room, wet and shivering from being caught in the rain while fishing and canoeing in the nearby lake, but smiling nonetheless. They wave a cheerful greeting to their parents before disappearing into another room to change into dry clothes.
It’s Sept. 9, the last day of Camp HLC Chicago, and they don’t want to miss out on anything.
Rankin smiles as the echoes of her daughters’ voices fade into the other room.
The weekend already has been filled with typical overnight camp activities – hiking, nature walks, rock wall climbing, archery – and Tess says she’s loved it all. Snuggled in her mother’s lap in warm, dry clothes, she adds without hesitation that her family will certainly attend Camp HLC when it returns to the Chicago area next year.
And then, having spent enough time with the grown-ups, she carefully descends from her mother’s lap – careful to step past the footrest of Rankin’s wheelchair – to return to the fun in the other room.
In 2017, Rankin was diagnosed with ALS at just 39 years old. Two years later, while the disease has limited her speech and movement, she and her husband do not let it limit the fun they have with their three daughters or the memories they create with them.
When Chicago’s Les Turner ALS Foundation partnered with Hope Loves Company – a nonprofit organization focused on “providing emotional and educational support to children and young adults who had or have a loved one battling [ALS]” – to bring the organization’s Camp HLC to the Chicago area for the first time, Rankin and Kribs immediately signed up.
“There’s an isolating factor to ALS because once somebody gets it, over time it’s hard for them to get around,” Kribs said. “There’s a lot of caregiving, so the nature of the disease, you kind of become a little more isolating. You can’t just go out with your friends like you used to. You can’t just go anywhere. You can’t just go here at the drop of a hat. So sometimes you feel isolated.”
This camp, he says, has provided his family the opportunity to connect with others who understand precisely what they are going through and it has allowed them to form a “common bond” with these families.
ALS is more prevalent among older men, Rankin says, with the average age of onset in the mid-50s, which has made it a bit more isolating for her, a young mother with small children.
“One thing that was really nice for me is that there’s another mom here who is around a similar age who is living with ALS,” she said. “Usually a lot of times people are older and men; ALS is more prevalent among older ages of men, so I haven’t met another mom yet who’s living with ALS. It was really helpful to connect with her. … We understand each other.”
Building a support network
for children, caregivers
Hope Loves Company was founded by Jodi O’Donnell-Ames.
In 2001, O’Donnell-Ames lost her husband to ALS. Their daughter was 9 years old at the time, and O’Donnell-Ames says the grief process for herself and her daughter were completely different.
“When Kevin passed away, three months later we went to a wedding,” she recalled. “I was crying most of the time because weddings are very emotional, I was widowed, I was heartbroken. Alina was 9 and she turned to me and said, ‘Stop crying; all you ever do is cry. I said, ‘Why don’t you just grieve?’ And she said to me, ‘What do you think I am doing?’ Her grief was being mad at me and that was mind-blowing. … That was the first time I thought, ‘This is far beyond what I can handle by myself.’ ”
Years later, O’Donnell-Ames met and married her current husband, who had also lost his spouse to ALS, and together they began raising three children, ages 12 and under, who were dealing with the effects of losing a parent to ALS. It was during her hunt for resources to help support her new family that O’Donnell-Ames realized that there was an unaddressed niche in the world of ALS foundations and organizations: support networks for caregivers and children.
“In 2007, the term Hope Loves Company came to mind,” O’Donnell-Ames said. “I basically started by sending out free books – I have a published book, there’s also ‘What Did You Learn Today’ [written by Tina Singer Ames, the late wife of O’Donnell-Ames’ current husband], we have printed that over and over again. We just started sending out these books to families and I would reach out and say, ‘I have done this, if I can be of help, I’m here.’ That’s how it started and it just gained momentum. To date we are still the only nonprofit with this mission.”
Laurie Fieldman is the director of social services with the Les Turner ALS Foundation and has been a longtime advocate for the power of support groups and camps such as Camp HLC. In the 1990s, Fieldman launched a camp for grieving children.
“I was one of those kids,” she said. “I lost my sister at the age of 10. I lost my big sister to a rare form of cancer. This was back in the dark ages when there was nothing for kids. The truth is … I didn’t know anybody else who had had a sibling die until I was in my early 20s. Maybe I did, but no one ever talked about it. I’ll never forget that moment, ever. That’s why I’m such a big proponent of support groups and camps.”
The moment she met O’Donell-Ames, Fieldman says she knew they would work together to bring Camp HLC to Chicago. After “several years” of organizing and securing funding, they are both thrilled to be hosting the inaugural Chicago branch of Camp HLC.
“I think you can spend just the first evening here, any half a day, and be a believer in this process,” Fieldman says. “It’s so powerful, even in the support group, for people to come in – walk in, roll in, however you can get into that room – and not have to explain yourself.”
In October, Hope Loves Company will be hosting its inaugural HLC Kids Count ALS Conference in Hamilton, New Jersey. The conference will further the organization’s mission to educate and support caregivers and children through this journey and“will feature speakers with a variety of knowledge and experiences, including neurologists, educators, child caregivers, art therapists, psychologists and more.”
Currently, Hope Loves Company has hosted its Camp HLC in six states – California, Colorado, Illinois, Indiana, Massachusetts and New Jersey – by partnering with ALS organizations and foundations local to each state. It hopes to grow to be a nationwide installation for families such as Rankin and her family.
“Everyone is so kind,” Rankin says. “They say they’re inspired by me and how strong I am. They’ve really taken [the girls] under their wing. … It’s just a really loving environment.”