D.C. Mom Whose Son Died of a Rare Disease Brings Joy to Other Sick Children: 'It's About Making the Most of Every Single Day'
"He just lived life to its fullest," Strongin says of her son Henry
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One year after losing their son Henry to a rare genetic disease, Laurie Strongin and her husband, Allen Goldberg, spent what would have been their son’s eighth birthday coming up with a plan to carry on his remarkable spirit.
“We had been thinking about what we were going to do on that day, given that Henry wasn’t with us anymore,” Strongin tells PEOPLE. “And so we really thought about honoring his legacy of being able to have a wonderful and normal life despite being really sick.”
That day, the couple founded the Hope for Henry Foundation to spread Henry’s joy and optimism to kids with cancer and other serious illnesses. Since its founding in 2003, the program has brought birthday parties, gifts and comfort to more than 15,000 kids at Georgetown University Hospital and Children’s National Medical Center in Washington, D.C.
Henry Strongin Goldberg was born with Type C Fanconi anemia, a rare and incurable genetic disease that causes bone marrow failure and caps life expectancy at age 30. His devastating diagnosis at just 2 weeks old meant Henry would spend his life in and out of the hospital – but that never dampened his spirit.
“He never thought about himself as sick,” Strongin recalls. “He was so happy that someone once described him as a kid whose smile was too big for his face.”
Henry maintained his sunny disposition as his parents did everything in their power to try and save their son’s life. After Henry died at age 7, Strongin wanted to bring his hopefulness and optimism to other kids facing serious illnesses and longterm hospital stays.
“When we started, we had been through seven years of medical procedures and lengthy hospitalizations. So we didn t have any money, but we had a great idea and a lot of grief, which I say is a very powerful driver,” Strongin says.
Hope for Henry started small by providing digital cameras, Gameboys and portable DVD players to young patients – “things that should be in the American History Museum at this point,” Strongin says with a laugh. After successfully fundraising, the program expanded to throwing birthday parties for patients – and eventually Halloween parties, Super Bowl parties and other special events.
The foundation’s programming focuses on giving every child the experience that Henry’s bravery and excitement afforded him.
“He just lived life to its fullest,” Strongin says. “For him, it was all about making the most of every single day. Hope for Henry is about bringing that can-do spirit and attitude and hopefulness and love of life to all these kids like him.”
In 2011, Hope for Henry expanded even further with the hiring of full-time child life specialists to provide emotional support to young patients from diagnosis through treatment.
Virginia mom Anne Cronin says this support was invaluable when her 17-year-old daughter Charlotte was diagnosed with leukemia.
“When Charlotte got her very first bone marrow biopsy, someone was there to hold her hand and tell her what was going to happen,” Cronin recalls. Just days later, when Charlotte’s sisters came to visit her in the hospital, they too were welcomed by Hope for Henry’s embrace.
“They were throwing a huge Halloween party and [Charlotte’s sisters] were scared to go,” Cronin tells PEOPLE. “But when we got there, the party was just so amazing and everybody was so happy and having so much fun.”
As Cronin explains, Hope for Henry’s programming works to bring people together at a time when the grief and anxiety of diagnosis and treatment could be deeply isolating.
“It gets all the kids together so they meet each other and become friends,” Cronin says. “Charlotte couldn t finish her senior year of high school [because of treatment], but she still had this fun experience of meeting new friends.”
Two years ago, the foundation added a new program called Hope for Henry’s Super Path to Super Duper Better – a patient incentive program that pays kids in Hope for Henry bucks for enduring the most difficult parts of treatment.
Cronin says this program made a world of difference when her daughter needed to have her head shaved after losing her hair from chemotherapy. The payment received for this and other aspects of treatment ultimately allowed Charlotte to score tickets to a One Direction concert.
“Even when it was so painful for an 18-year-old girl to get her head shaved, they told her, ‘We’re gonna pay you 500 Hope for Henry bucks,’ ” Cronin explains. “So they turned something really traumatic into a positive.”
The impact of Hope for Henry goes far beyond changing attitudes – it has been shown to improve medical outcomes, too. Research has shown that reduction in anxiety and fear can lead to improved patient outcomes and reduce the likelihood of psychological issues resulting from treatment.
As child life specialist Carolyn Schneiders Fung explains, “It’s kind of these little things in life that surprise the kids, make them smile and ultimately send these great positive endorphins through their bodies and that heals, too.”
In the coming months, Hope for Henry will expand once again, this time in favor of Strongin’s dear friend Lenny “Batman” Robinson. Robinson, known as Maryland’s Route 29 Batman, volunteered with Hope for Henry, visiting hospitals in a Batman costume until he was killed in a car accident in August.
“The fact that he also died tragically and prematurely was so devastating,” Strongin says. “I’ve come together with his family and best friend and we’re starting the Lenny Batman Robinson hope for henry program at Sinai Hospital in Baltimore. It’s so amazing because Henry and Lenny are coming together even though they never knew each other because Henry died before Lenny was Batman.”