Last summer, at the age of 49, Randie Lynn was diagnosed with amyotrophic lateral sclerosis (ALS)—also known as Lou Gehrig’s disease. The progressive disease affects parts of the nervous system that control voluntary muscle movement, affecting a person’s ability to speak, walk, eat and breathe independently. There is no known cure for ALS, and patients typically survive for about two to five years after diagnosis.
Randie’s wife, Charnelle Bain-Lynn, now transports him to and from doctor’s appointments and assists him at home. The West Orange couple has two daughters, 18-year-old Amaya and 12-year-old Aubrey.
After Randie’s diagnosis, the family’s counselor connected them with Hope Loves Company (HLC), a nonprofit based in Pennington that provides emotional and educational support to children and young adults who have or had a family member battling ALS.
There are 30,000 Americans living with ALS. Nearly 85 percent have a child or grandchild. HLC is the only organization dedicated to supporting the children in affected families. It provides free resources, including children’s books about ALS as well as care packages.
Founder Jodi O’Donnell-Ames’s late husband Kevin was diagnosed with ALS at 29. She struggled to care for their young daughter while also being her husband’s main caregiver until his death six years later. “The well parent is so preoccupied,” says O’Donnell-Ames. “Think of the emotional toll that takes on the children.”
O’Donnell-Ames remarried, to a man who also lost his partner to ALS. They observed that their three children—all of whom lost a parent to ALS before age 12—were processing grief differently. So in 2007, she started HLC to help similar kids.
“Jodi is not someone who started a foundation just because,” says Bain-Lynn. “She lived what I am living.”
HLC’s programs include three-day summer camps, which are free and take place in New Jersey and five other states. “Our campers often say, ‘This is the first time I haven’t had to explain ALS,’” says O’Donnell-Ames.
The Lynn family attended a camp last year. “All the kids there knew they had experienced the same thing,” says Bain-Lynn, who is grateful for the support HLC provides.
“For me, helping is healing,” says O’Donnell-Ames. “When you help a child, you help parents.”Click here to leave a comment