For Readers

Reading Group Guide

If you’d like to host an event, a house party, or a book club meeting with Laurie Strongin, please contact her at laurie at hopeforhenry.org or 202.277.2710.

Downloadable Saving Henry Reader’s Guide (PDF)

  1. Saving Henry is called “A Mother’s Journey.” How did Laurie and Allen deal with Henry’s illness and death similarly and differently?
  2. Allen, as the father, had to sit on the sidelines relatively powerless as the struggle to save Henry played out in Laurie’s body. How do you think that affected their relationship? Was Allen overly optimistic because he was not the one undergoing invasive medical procedures? Was theirs just a typical male/female response to a crisis?
  3. Laurie and Allen tried in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD) to have a child who would be a stem cell donor for Henry. They said that they intended to have additional children with or without the intervention. What if Laurie and Allen hadn’t planned on having any more kids? Would it have been acceptable to pursue these interventions primarily to produce a cord blood, tissue or organ donor for a sibling?
  4. PGD (along with IVF) is an expensive procedure that requires tens of thousands of dollars and is seldom covered by insurance.  Is it fair that only those people who can afford expensive medical services are able to ensure that their children are free of disease—or to use it to save the lives of children like Henry? What would be an alternate solution?
  5. Laurie was very honest about being physically and emotionally exhausted by the medical procedures she underwent. According to Laurie, Henry never felt sorry for himself. Did Laurie feel sorry for herself? How did your impression of Laurie change throughout the book?
  6. What happens if a child is born using IVF/PGD to save its sibling, and, following the stem cell transplant, the sick brother or sister dies. Is it fair to create such a potentially terrible emotional burden for that surviving sibling?
  7. Laurie and Allen had their other sons, Jack and Joe, with them throughout all of Henry’s hospitalizations. Jack and Joe also were bed side when their brother Henry was taken off life support. Did Laurie and Allen do a disservice to these very young children by exposing them up close to the pain and sadness of their brother’s life and death? Did the children benefit in any way from their experience with Henry?
  8. Laurie and Allen remained constantly public throughout Henry’s illness and his death, including the publication of this book. Did this help Henry and others like him? How do you think it affected his two brothers? If you faced a similar set of challenges, would you go public or be more private?
  9. Allen and Laurie consider themselves “lucky.” How is it possible to have a child with a serious illness like Henry and ever consider yourself fortunate?
  10. As Henry’s story shows, PGD is now being applied beyond its original purpose of screening for disease. Is it acceptable to for parents to use PGD:  to ensure a child has certain eye or hair color? to ensure a child is the desired gender or sexual orientation? to ensure a child is deaf like his parents? to ensure a successful pregnancy?
  11. Did this book change your outlook on life or your position on stem cell research, PGD or other scientific or ethical matters?

For Further Reading

Allen and Henry
Allen’s Blog of Henry’s Last Days
Allen’s Letters to Henry
The New York Times’ “Motherlode” Blog

Hope for Henry
Hope for Henry Foundation

Hope for Henry Foundation Blog
Hope for Henry Video
Live Well Laugh Hard Jewelry by Mauri Pioppo

Fanconi Anemia and Pre-Implantation Genetic Diagnosis
Fanconi Anemia Research Fund

Los Angeles Times
Op-Ed: “Select a Baby’s Health, Not Eye Color,” by Allen Goldberg

Media Appearances

New York Times Magazine Cover Story
“Made to Order Savior,” by Lisa Belkin

ABC Nightline (Video)
Love & Science: Henry’s Story

ABC Nightline (Transcript)
Love & Science: Henry’s Story

New York Times Op-Ed
“Stem Cell Research and a Parent’s Hope,” by Allen Goldberg

The New York Times Vows Column
The Wedding of Ali Mendelson and Jeremy Winaker

CBS Early Show
Laurie and Family – President Obama Signs Executive Order on Stem Cell Research

NBC News
Laurie and Allen – President Obama Signs Executive Order on Stem Cell Research

MSNBC 1600 Pennsylvania Avenue
Laurie and Allen – President Obama Signs Executive Order on Stem Cell Research

The Washington Post Op-Ed
“Vetoing Henry,” by Laurie Strongin

If you’d like to host an event, a house party, or a book club meeting with Laurie Strongin, please contact her at laurie at hopeforhenry.org or 202.277.2710.

Saving Henry book cover
Available at any of your favorite online booksellers

Meet Henry

Hope For Henry Foundation