Strongsville Author Takes His Message to New York City

Ever heard of hemophagocytic lymphohistiocytosis?

Probably not. Neither had John Henkels until it claimed the life of his 16-month-old son 14 years ago.

Samuel went into the hospital before his first birthday and spent his last seven months taking chemotherapy and battling the effects of a bone marrow transplant, unable to eat or drink anything for the last four months of his young life.

"What these kids go through is just torture," Henkels said.

Since then, Henkels, who was featured in a June 2012 story on Strongsville Patch, has written a book, called Samuel's Mission, that chronicles the family's years-long path from devastating loss and anger to acceptance and — eventually — a return to joyous living.

His purpose now is twofold: 

° To help raise awareness of HLH, which affects a child's immune system, to get money for research

° And to let parents consumed by grief know there is hope for a joyous life again.

Henkels and his family — wife Suzanne and sons Zach and Jacob — visited New York City July 20-23 to renew their commitment to fighting HLH as part of Liam's Lighthouse Foundation, which seeks to find a cure for the disease.

John was keynote speaker at a gathering of the hundreds of families, focusing on Post Traumatic Marital Disorder, explaining how he and Suzanne survived as a couple after losing Samuel.

"Our marriage was on the edge of a cliff after four or five years of grief," he said.

They had totally different ways of grieving. They had so much anger.

But it's possible to lose the anger and embrace happiness again. Henkels recalls vividly the day Suzanne chose to be happy againd and her "thousand-watt smile" returned.

"I remember the day that smile came back. It was just magical," he said.

While in New York, the Liam's Lighthouse families gathered outside the sets of the Today show and Good Morning America. In both cases, show hosts came outside to chat, accepted copies of Samuel's Mission and gave the group some camera time.

Henkels has become a sought-after public speaker, offering hope to not only HLH families but to anyone who has suffered a loss.

"The message goes beyond HLH to all grief — how you can live with grief and still feel joy," he said. 

Many grieving couples don't feel any hope that they will ever again be happy.

"I want to spread the message that there is hope," he said.

The book is available on his website, samuelsmission.com, the Samuel's Mission Facebook page or through the Amazon and Barnes & Noble websites.

A portion of every sale goes to Liam's Lighthouse Foundation.