50,000 kids served

By Laurie Strongin, Founder and CEO, Hope for Henry Foundation

Imagine. You are told that your two-hour-old child has a heart defect, necessitating open heart surgery. That seems — no actually it is — really terrifying. That is, until two weeks later, when he is diagnosed with a rare, incurable blood disease that threatens to take his life before kindergarten.

That is what happened to me and my husband Allen Goldberg when our first child, Henry, was born in 1995.

But here is the thing.

We aren’t alone. Not even close.

Every 15 minutes a baby is born with a heart defect. And 15,000 kids a year are diagnosed with cancer. The average length of treatment is 1,095 days. That is nearly three years.

These kids are patients, yes, and they need medical care to survive. But medical care alone is insufficient. To have a chance of thriving — not only when they are sick — but long after treatment is over, they need to have a magical and wonderful childhood despite their illness. Because the whole point is for them to leave the hospital with as few psychic scars as possible so they can rejoin their families and friends and schools and grow up to be well-adjusted, productive adults.

We learned about the indisputable connection between quality of life and healing first-hand, living in hospitals around the country for 2 ½ years following Henry’s bone marrow transplant at age 4. We celebrated birthdays in the hospital. We trick-or-treated in the hospital. We watched the premiere of Harry Potter and the Sorcerer’s Stone in the hospital. We did it all.

To honor Henry’s legacy of living well and laughing hard even in the face of serious illness, on October 25, 2003, on what would have been Henry’s eighth birthday, Allen and I established Hope for Henry Foundation to reimagine how hospitals care for kids like Henry, whose lives are disrupted for such long periods of time. Because not every parent can do for their child what we did for Henry. And because they shouldn’t have to.

We started Hope for Henry in our basement. We were singularly focused on improving the pediatric patient experience. This was way before the words “patient experience” became part of our lexicon. And here we are 16 years later, a national leader in pediatric patient experience programming.

Recognizing the restorative effects of laughter, entertainment, and normalcy, and how much they add to a patient’s quality of life and ability to heal, Hope for Henry does for other children what we did for Henry. We fill the time they are waiting to get better with comfort and care, along with fun and motivation to heal.

At leading hospitals around the country, like MedStar Georgetown and Cleveland Clinic, we hire and embed full-time child life specialists who get to know the kids as people, not just patients, and provide needed distractions during scary and painful medical procedures. We bring the wonder of childhood to hospitalized kids by hosting special events throughout the year like superhero extravaganzas; spa days; birthday parties; movie premieres; visits from professional athletes, musicians and authors; and more. We smooth the transition from home to hospital through our Room of Your Own program, providing comfy and cozy spaces in patient’s rooms to promote healing. And our industry-leading patient incentive program — Hope for Henry’s Super Path to Super Duper Better–is rewarding kids for doing all the difficult but necessary things they need to do to heal. By paying them in Hope for Henry Bucks–which they exchange for gifts off their wish lists–they are engaged positively in their recovery while increasing adherence to their medical protocol.

In 2003, Hope for Henry served our first patient at MedStar Georgetown University Hospital in Washington, DC. We just served our 50,000th.

Now in 11 hospitals around the country and growing, we are a recognized national leader in pediatric patient experience programming. Every week, we get calls from hospitals around the country who want our program because it is proven to helps kids heal.

Our goal is to serve every single child at every hospital in the country. Because our program works. We know it because doctors tell us it’s increasing adherence with medical procedures. Because parents tell us when a child cashes her Hope for Henry Bucks for a reward, it’s the first time they have seen her smile in months. Because child life specialists tell us about patient after patient who can now swallow big pills or want to get poked “now” so they can get their 100 Hope for Henry Bucks and get that much closer to getting their Nintendo Switch. Because kids tell us that — despite being in the hospital — their birthday was the “best day ever!”

All because of Hope for Henry.