Amyloidosis Patient Writes Children's Book to Help Kids Understand Parent's Illness

By Alan Lyndon

In 2007, Jenifer Gershman, 38 at the time, was diagnosed with amyloidosis, a rare and potentially life threatening disease. The treatment was aggressive: peripheral blood stem cell transplantation with high-dose chemotherapy and transfusion of previously collected immature blood cells (stem cells) to replace diseased or damaged marrow.

Jenifer had two transplants in 2007 and 2008, both of which required her to be separated for a month at a time from her then-four-year-old son, Jason.  The news was devastating to Jenifer, who knew she would need to prepare and reassure Jason about her absence, as well as the changes he would see in her physical appearance and abilities.

“I wanted to find a book to help me explain my illness and the treatment I would need, but the only books available were about cancer or other conditions different from my own,” Jenifer said.

Since she could not find any such resource appropriate for a four-year-old, Jenifer “made up my own fun story for him to help him understand the changes he would see in my appearance and physical abilities.  I told him truthfully what to expect, but used language he could understand, and because I shared these facts in a positive way, he was not frightened or worried about me.”

Those stories and explanations led Jenifer to write “Where Did Mommy’s Superpowers Go? Helping Children Understand a Parent’s Serious Illness” – a story for all parents struggling to balance a serious health crisis while caring for small children.  “What makes this book special and sets it apart from others is that no particular disease or medical treatment is specified, so it can be a resource for any family facing this challenging time, regardless of diagnosis,” explained new author Jenifer Gershman.

The story shows the close and loving relationship between a little boy and his mommy. When Mommy gets sick, she talks openly with her son in language he can easily understand, and does so in a positive, upbeat way that is less frightening for him. Her little boy learns what to expect, and along the way, he and Mommy still have some fun!

Today, Jenifer is in remission and living a healthy, active life in Massachusetts with her husband Steven and their son Jason, now 8.  “Where Did Mommy’s Superpowers Go?” is available at several Boston area bookstores and online at Amazon.com.