Laurie Strongin's son Henry was diagnosed with fanconi anemia, a disease that often proves fatal. Despite the devastating diagnosis, Henry maintained a positive attitude, inspiring all who met him.
Laurie and her husband try everything to find a cure, and in "Saving Henry," she chronciled her family's fight for its son.
Read an excerpt of the book below, and then head to the "GMA" Library to find more good reads.
Henry's Favorite Things
His girlfriend Bella
Bathing by candlelight
Wearing (and eating) candy necklaces
M&Ms (plain, not peanut)
The list of Henry's favorite things is lengthy and wide-ranging. Marbles, watches, and Tom and Jerry cartoons. Batman, Cal Ripken, and a Pokémon named Charizard. Skittles, chocolate croissants, and garlic bread. Having a lemonade stand, taking a bath by candlelight, and making telephone calls.
But at the top of the list of Henry's favorite things is a little girl who is as beautiful as her name, Bella. As Henry got sicker and sicker year after year, his list of favorite things grew to include more unusual items: electric blankets, portable urinals, root beer-flavored anesthesia.
Still, Bella Herold, the love of Henry's life, was always, without question at the top of his list.
Henry met Bella in September 1998, on one of his first days as a member of the Sunflower class at a preschool in northwest Washington, DC. Bella was the teacher's helper, the teacher being her mother. By the time I arrived to pick him up, Henry was in love. At two and three respectively, Henry and Bella's dates were supervised. And there were lots of them. Sometimes she came over to our house to play soccer, or tag, or to go out for an ice cream cone. Sometimes he went to her house for pizza or swimming, or to meet her new hamster. Each October, they celebrated their birthdays together. Henry gave her jewelry. Bella gave him Batman t-shirts.
"Mom, come see what we did!" Henry yelled one afternoon from the front porch where he and Bella were shooting stomp rockets into the street and over a neighbor's house. "We wrote our names, and Jack's too!" To this day, the bricks on our front porch are covered with faded pink, blue, and yellow chalk advertising, "Henry," "Jack," and "Bella," alongside hearts, stars, and a few simple math equations.
Henry spent a lot of time with Bella, her mom Liane, and her sisters. One warm, summer day in June of 2000, Bella invited Henry, now age four, to go swimming at the Inverness Recreation Club in her suburban Maryland neighborhood.
"See you later, alligator," I called out to Henry, as my husband, Allen, and I drove away.
"While, while, crocodile," he replied.
According to Bella's mom Liane, Henry and the girls swam and played in the pool for a long time. When they were done, Henry jumped out of the pool and took off his wet bathing suit, leaving him naked, in close proximity to the girls and all the other swimmers and non-swimmers at the pool that afternoon.
"Mom," Bella whispered insistently, "Henry's naked. Get him to put his clothes on, or at least a towel."
Liane offered up both possibilities, to which Henry replied, "It's okay. I'm good."
When it came time to go back home for lunch, Henry walked with Bella and her family from the pool several blocks to their house, completely naked, without a care in the world, an expression of the self confidence that would serve him well in the years to come.
When I asked Henry what he liked most about Bella, he said, "Everything." From the sweet smile on her freckled face, to her long straight brown hair that was often adorned with flower-covered headbands, to her slightly shy and down-to-earth personality, she was more than just likable. So much so, that Henry stopped saying that he was going to marry me. So much so, that I didn't even mind. The only other girl that ever tempted Henry was Snow White, whom he spent a few days chasing around Walt Disney World. But even she, the Fairest of Them All, couldn't compete with Bella.
As Henry got older, and a little bit sicker, Bella – along with new movie releases, trips to the Pokémon Center in New York City, wax bottles from Candy Kitchen in Rehoboth Beach, Orioles games, and birthday parties – was a driving force behind his Let's Just Do It! attitude, and his unwavering and continuously-tested determination to get out of the hospital. When Bella called to invite Henry to her ballet recital in June 2002, nothing was going to stop him from being there.
Henry had recently graduated from kindergarten. Like many six-year-olds, his portfolio of artwork was filled with white paper covered with colorful magic marker print that read "HENRYHENRYHENRYHENRYHENRYHENRY." His handwriting was beautiful, earning him a "P" from his teacher, for Proficient. He was great at drawing hearts and flowers, and I have stacks of notes advertising his love for me. My favorite is on a yellow-lined Post-It that has a picture of us and the words, "HENRY. I LOVE YOU MOMY. I WILL OOWET LOVE YOU." ("Oowet" is Henry for always.) Later, he made a poster publicizing his love for Bella. It's a beautiful picture of them, two stick figures with huge smiling faces, along with three words, all capitalized: Henry. Bella. Belove.
Henry and Bella were well into the fourth year of their courtship, and things were going strong. Henry's bedside table featured a picture of Henry in his number 23 Michael Jordan Chicago Bulls jersey, and Bella in a pretty blue dress with little white flowers. They had spent the afternoon playing soccer together in our backyard. At this moment in time, Henry is kissing Bella's cheek and she is smiling. Although you can't tell by looking at the picture, they are also holding hands. Bella, too, had a picture of the two of them in her room at home. When Bella sent Henry cards, for his birthday or to plead with him to Get Well Soon, she signed them "I U, Bella", which was all he needed to know. Early one warm and sunny morning, I felt Henry's presence by my bed. When I opened my eyes, there he was. Sporting a yellow button-down shirt, blue blazer, and khaki pants, Henry was dressed and ready to go.
"Mom, get up," he was whispering. "We need to go see Bella. We need to go now. And don't forget what we talked about." The night before, Henry explained that we would need to leave a little early because he wanted to buy flowers for Bella to give to her after her dance recital. I looked at the clock: 6:32 a.m. We had three hours, 28 minutes.
Henry picked out the most beautiful white roses he could find, and we arrived at the auditorium in plenty of time. Henry joined Bella's mother, sisters, and grandparents to watch her dance. I had left – it was a date, after all – but Bella's mom, or "Little L," as Henry affectionately called her, summed up Henry's expression as "mesmerized." I'm not sure if she was describing how he appeared during Bella's performance, or afterwards, when she shared the same seat with him for the remainder of the recital.
On October 25, 2002, Henry's seventh birthday, he and Jack, his younger brother, were treated to a private performance at our home by a magician named Turley. Henry's white blood cells had failed him again, necessitating yet another prolonged period of isolation from friends, school, movie theaters, ice cream parlors, amusement parks -- just about everything and nearly everyone that made life worth living. Turley was able to draw laughter and awe from the boys, but despite being the master of making a triple scoop ice cream cone with jimmies from stale milk and ants, Henry knew that a birthday party with no friends isn't much of a party at all.
Later that evening, Henry whispered in my ear, "Mommy, it's my birthday and I really want to see Bella." He added, "Don't tell anyone. Definitely don't tell Dr. Wagner." Henry knew that I would understand that a date with Bella could more than turn the day around. I asked Allen to take Jack upstairs and get him ready for bed. Within minutes, Henry and I were in the car. Destination: Bella's house. I knew that the risks associated with seeing Bella were nothing compared to the rewards. If we snuck in a visit with Bella from time to time, Henry would keep fighting, and one day he would get better.
For hours, Henry and Bella sat on her couch and watched TV, played games, talked, and laughed. I took a few pictures for Henry to add to his collection and to record yet another chapter in the amazing love story of my spirited son and his sweet girlfriend.