A nonprofit worked this weekend to support families of ALS patients by providing a camp for kids.
ALS, or Lou Gehrig's disease, causes limited physical functioning. Average life expectancy is between two to five years.
Hope Loves Company provides a free camp for children and teens whose lives have been changed after a parent or family member is diagnosed with ALS or are living with someone who currently has it.
One rainy Saturday did not stop the kids at the camp at Fairview Lake from having a good time, but that is what this particular camp is about --- turning rainy days into hope.
Seven-year-old Harper Sickinger and her sister Olivia began to spend summers at Hope Loves Company when their father was diagnosed with ALS.
"My husband is at the point where he has no more function. He's a quadriplegic," said their mother, Diana Sickinger.
His health began to decline right before the pandemic.
"It was a big deal because we were learning about this new diagnosis, wanting to get confirmation -- it was hard to see doctors," Diana Sickinger recalled.
One of the toughest challenges for her was the questions her daughters asked about their father's diagnosis.
"'Why is dad maybe not walking anymore?' and 'Why is he in a wheelchair? And will he get better?'" she recounted.
It was hard for Sickinger to find others who are in the same situation.
"There's a lot of support and a lot of fundraising and a lot of awareness for ALS, and a lot of advocacy, but there isn't as much for children and what they go through," she said.
A support group told Sickinger about Hope Loves Company.
"Camp HLC is a combination of a fun weekend camp experience for children but also recognizing that we come here together because of three letters -- ALS," said Hope Loves Company founder Jodi O'Donnell-Ames.
Hope Loves Company is the only nonprofit in the country that offers emotional and educational support for kids who have parents diagnosed with ALS.
"It's a place where children and families can feel safe and know that they don't have to explain ALS to anyone because we already know about it," O'Donnell-Ames said.
Hope Loves Company also offers a place where conversations with people in similar circumstances could blossom into new friendships.
The camp is held every year at Fairview Lake for ages 6 to 21. This year, the nonprofit is doing a new retreat for young adults.