Shared moments and experiences

Hope Loves Company and Camp HLC celebrates 10 years providing for families impacted by ALS

The impact of ALS, amyotrophic lateral sclerosis, a fatal disease, can be great not only for the person diagnosed, but for his or her family — especially children.

For 10 years, Camp HLC has provided not just weekends full of fun and games, but shared moments and experiences for the youth, whose families have been impacted by ALS.

In the midst of ALS Awareness Month, Hope Loves Company completed its New Jersey leg of Camp HLC from May 19-21 at Camp Fairview Lake YMCA in Newton.

The nonprofit based in Pennington has been working with families affected by the disease over the course of a decade and provides the camps free of charge to the impacted families.

“This year is our 10-year anniversary of Hope Loves Company and Camp HLC,” said Linda Sermons, HLC program manager. “New Jersey Camp HLC was our first in-person camp back that weekend. Our theme this year was ‘Making Connections along the Journey.’”

ALS, also known as Lou Gherig’s disease, causes an individual to lose muscle and body function as the disease progressively breaks down their nervous system and takes away their ability to walk and talk. It does not have a cure.

“For those who don’t know, ALS is such an isolating disease and you can feel so alone as adults,” Sermons said. “So, for kids and the whole purpose for Hope Loves Company is to help the children, teens and young adults through the process to know they are not alone, and someone is there with them.”

Camp HLC has been designed by HLC founder Jodi O’Donnell-Ames and her administration team to provide children not only with games, interactive activities, pep rallies, music and socials, but also provide hang out group shares of the journey with ALS.

As the nonprofit was planning the activities and programming for the “Making Connections along the Journey” theme camp, they wanted to intentionally create bonding memories through the rope courses, giant swing, and different activities.

“Creating opportunities in a safe space with people going through similar experiences to connect in a way they would not connect back at home or with a best friend at school, because the journey is different for everyone,” Sermons noted.

Through core programs of music, art and mindful activities, Camp HLC, which serves children and youth ages 6 through 21, helps anyone attending camp, who may not open up easily.

“We did mindful activities in Newton with our founder Jodi O’Donnell-Ames, we did art with the YMCA through ECO art, which is nature and exploring nature, and creating art from that. We also have trained professionals onsite,” Sermons said.

The nonprofit with trained professionals creates opportunities in person called hang outs, which are also offered virtually monthly.

At camp, the in person hang outs set a tone and space for the children and youth to have conversations about the journey, their feelings, about the diagnosis, and about their loved one. It provides the coping skills for them to get through.

Sermons said, “Through all those different things weaved throughout the weekend mixed with some fun and mixed with lots of support, we slowly start opening the doors, breaking down boundaries, and melting the ice to open up the platform for them to open up and be available to express and have fun at camp.”

Diana Sickinger’s daughters 10-year-old Olivia and 7-year-old Harper are some of the many children who have attended Camp HLC. Their father, Phil, was diagnosed with ALS.

“Last year, Camp HLC was returning to in person in May of that year and once I saw that I said we absolutely have to go to this,” she said. “I have to get my girls here to meet other kids who are like them and meet other spouses going through this. It is the single most gratifying experience I have had with my children since all of this started.”

Sickinger and her daughters went to the New Jersey camp in May and Massachusetts camp in August of 2022. They returned to the New Jersey camp this May.

“My eldest Olivia, she is my quieter one, and does not really like to talk about what is going on with her dad and doesn’t want to ask questions. I know she struggles with it,” she said. “My younger one, because she is so little, and does not really have a lot of memories before he was sick since she was young, she is a little more outgoing.”

Sickinger noted seeing a physical change with her daughter Olivia since camp. She thrived.

“She was excited to participate in the activities that they had, and they just get to be kids for little awhile,” she said. “When she started to meet other kids who had either lost a parent already or are still going through it with a parent, you could just tell she finally felt accepted maybe or felt safe to be finally around people who really understood what she was going through.”

She heard about Hope Loves Company and Camp HLC in 2020 from Joan Dancy & pALS (People with ALS), a foundation that provides grants and services to ALS patients in Ocean and Monmouth County.

“I reached out to them, and the girls were initially sent these care packages from Hope Loves Company that included a stuffed animal, some snacks, a T-shirt, and a book written by someone with ALS for children that kind of explained this in a way children can understand,” Sickinger said.

ALS impacted their family when her husband, a police detective, was diagnosed in January 2020.

“Every ALS case is different depending on your onset of symptoms,” Sickinger said. “Over the three years, it was a slow transition of needing a little bit of assistance, first using his hands maybe some help eating or brushing his teeth. Then we transition from a cane to a walker to a power wheelchair.”

Sickinger is still at home with his family and no longer has motor function. He is now 100% dependent on help and care for dressing, grooming and everyday care and uses a noninvasive ventilator for respiratory help, according to Sickinger.

“We still do get him out occasionally from time to time, whether it is to see something for the kids or get a little fresh air,” she said.

With the COVID-19 pandemic shutting things down a few months after Phil Sickinger’s diagnosis, the Sickinger family had difficulties getting confirmation and information about his diagnosis and any support for him.

“[All the while] there really was no support for the kids of how to explain to them about what was going on with my husband,” Sickinger said. “[Explain] about age-appropriate ways to talk to them regarding what the changes would look like. About how they were not going to have so much in common with their friends.”

She shared the journey had been difficult trying to find help to better support her daughters to feel a little more normal.

“Camp HLC gives the kids the freedom to have a safe space and gives us, the parents the primary caregiver’s kind of a break,” Sickinger said. “I remember last year at the Massachusetts camp in the afternoon, the girls went off to do some of the activities that were led by HLC staff and camp counselors, and I went and took a nap.”

She said “a nap” may sound like such a small thing, but in a situation where a family is impacted by ALS, the primary caregiver does not get a lot of sleep for a lot of different reasons.

“I was able to take a nap and know that everyone I typically care for is being cared for,” Sickinger said. “Even if there is a situation where maybe I can nap at home I am wondering if my husband needs me or what the kids are doing.

“They have a parents group session where it is just with the adults, and you share what you are going through or join the activities. Last year, I did the giant swing and had so much fun.”

Since 2012, there have been 47 Camp HLCs held providing those shared moments and experiences among children and youth.

For more information on Hope Loves Company, visit www.hopelovescompany.org.