Case Cares Foundation Provides Essential Support for Grieving Families After the Loss of a Child

Article in JMore Baltimore Jewish Living...by Simone Ellin

Few if any tragedies are as devastating as the loss of a child. Parents are not meant to outlive their children. Yet, sometimes the unthinkable occurs. It happens to Marci and Brian Scher, who lost their beloved son, Ian, on Sept. 15, 2016. After a debilitating lifelong illness, Ian succumbed at age 13 to complications of spinal muscular atrophy and pontocerebellar hypoplasia, a rare genetic disease that affects the brain, causing muscle weakness, eventual loss of motor function, and breathing difficulties. Though he was terminally ill, Marci Scher had not expected to lose Ian so soon.

Almost a year later, the Reisterstown couple and Ian's twin sister, Becca, are slowly adjusting to their new reality.

"It's a lot quieter," says Scher, tears filling her eyes. "We're used to hearing machines, ventilators. We're used to having a nurse in the house 20 hours a day," she adds. "We do more things as a family. When Ian was here, either me or Brian usually had to stay home with him, so only one of us could take Becca out."

Now 14 and a freshman at Franklin High School, Becca is extremely "resilient," Scher says of her daughter. "Most kids can't comprehend what she's been through. We tried to treat her as normally as possible under the circumstances." But Scher wishes Becca knew another teen who could truly relate to her experiences. Overall, says Scher, an administrative assistant to the executive director at Chizuk Amuno Congregation, "We're doing all right."

That's not to say that the pain has passed.

"It's a lifelong journey," says Scher. "When you lose a child, there's always a part of your heart that's missing." After the child is gone, Scher adds, "the family still needs support. Sometimes people are afraid to talk about Ian. They feel uncomfortable or think it will upset us. But we want to talk about him. We want him remembered."

One source the Schers turned to during Ian's illness and after his passing was the Casey Cares treated Ian and Becca to birthday parties, pizza and movie nights , circus tickets and, best of all, an opportunity for Ian to throw out the first pitch at an Orioles game. 

Founded by Maryland native Casey Baynes in 2000, the Baltimore-based organization offers a range of programs for critically ill children and their families in the mid-Atlantic region.

Baynes knows firsthand what it's like when a family loses a child. Her own parents lost a baby at 3 days old. Though the death occurred before Baynes was born, she felt the sibling's absence nevertheless. 

"Even when the child is no longer there, the family carries [the loss] with them. That child is always there in spirit," says Baynes.

It was important to Baynes therefore, to ensure that families still can take advantage of Casey Cares' goodies even after a child is deceased. For example, over the summer, the Schers received complimentary tickets to Hersheypark. They also participated in Casey Cares' Orioles 5K Run & Walk last month. "We've always registered [for the race]," says Scher. "But since [previously] Ian has always been sick, this is the first year we could participate."

Kim Meyers, Casey Cares' program director, says the organization's Better Together program is designed to help the family heal and to raise their spirits. "We offer a lot of support to siblings and parents," says Meyers. "It's an extremely sensitive thing. When we talk to parents whose children have died, we can't even tell them how sorry we are. There are no words....They know we are here," she says.

"[After a child dies,] a mother may not be able to get out of bed for weeks and she may need help with her other kids. A lot of times I'll be the one to reach out to see if they need anything ." Typically, says Meyers, families who take advantage of Better Together stay with the program for about a year.

"We had one family -- they were getting ready to celebrate the holidays -- and they just couldn't stand to be in their house without their child during the holidays. So, we found them a hotel, arranged meals, activities. We take care of all the planning so they don't have to think about anything."

Meyers arranges for tickets to special events for surviving siblings, always providing an extra ticket so the sibling can bring along a friend. That's what she did for Becca Scher when they sent her family to Hersheypark.

"The beauty of Casey Cares is that we get to know all the families," says Baynes. "They're all special and unique. Kim has the pulse on everyone. Sometimes, she'll come into my office and say "Hey listen, this mom really needs a spa day. I know it's not in our budget but.... We've never turned down a request."

"Ian's death hit us hard," says Kim. "We all knew him. I'll never forget the first time I met him. Ian was still able to communicate and we met him at the stadium [Oriole Park]. He threw out the first pitch. His sister, parents, grandparents were there. His father was so proud! It was a good day."