Near-Tragedy Creates New Family Friendship

Posted November 25th, 2015 by Be The Match and filed in News
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Learn-Live-Hope GALA 5-18-2014 1891Seven-year-old Hannah’s sickle cell disease led her to a bone marrow donor—and a cherished new friend.

If you were to picture a patient who had suffered a stroke, you probably wouldn’t imagine young Hannah, whose nickname is Miss Personality. This little girl’s radiant character could compete with the hot sun in July.

For someone with such a shining personality, it’s hard to believe that at one point, Hannah was too sick to leave the hospital. At just 30 days old, Hannah was diagnosed with sickle cell disease (SCD) – a genetic disorder that affects the body’s red blood cells, often causing strokes and other serious side effects. Hannah’s first stroke occurred in 2011, when she was just three-years-old. Since then, her family has lived under the cloud of Hannah’s life-threatening disease.

Sickle cell disease is an inherited blood disease that causes red blood cells to become stiff and take on a crescent or sickle shape. Blood flow becomes blocked when the abnormally shaped cells can’t effectively deliver oxygen throughout the body. The result can be: severe pain, organ damage, and, as Hannah experienced, strokes.

SCD affects about 80,000 people in the U.S. of many different ethnic backgrounds, including about 1 in 500 African Americans.

Doctors proceeded cautiously after Hannah’s stroke, ordering the first of many blood transfusions. Hannah shuttled between the hospital and doctor’s visits during much of the following year.

But it soon became apparent that her transfused blood couldn’t compensate for her defective cells—and that she was in danger of another stroke.

Hannah’s medical team began searching for a matching bone marrow donor on the Be The Match Registry®, the world’s largest and most diverse bone marrow donor registry.

A Selfless Act

Two years earlier, Natalie, a San Antonio nursing student, heard a presentation about the Be The Match Registry. She decided to sign up immediately.

It was a small sacrifice, she thought, in exchange for a life-altering impact. She swabbed her cheek and forgot about it, never imagining that she could save a life—and enrich her own.

In the spring of 2012, Hannah’s seven-month search for a matching bone marrow donor led her doctors to Natalie. It was a call Natalie will never forget.

When she got the call, she was flooded with emotion—surprise, excitement and above all, hope. She hoped for the best for the young patient, described to her as a 4-year-old girl with sickle cell disease.

Natalie prepared for her donation with injections designed to stimulate the production of bone marrow cells. “They weren’t terribly painful, I just felt a bit achy,” she recalled.

On her donation day, she spent several hours hooked up to an IV, watching movies, napping—and gaining a new perspective on what her patient’s experience.

She took it easy that night and returned to work the next day. And then came the hardest part: waiting to hear if the little girl’s transplant was successful.

Hope for Hannah

Hannah’s transplant took under 13 minutes—but she’d had to endure chemo and radiation beforehand. And her recovery was far more challenging. She spent months in the hospital and had to be isolated for nearly a week to protect her fragile immune system.

But by the time Hannah went home, the “bubbly little girl” was well known and widely loved by everyone on her hospital floor. She knew the names of the staff better than most of the adults.

Today, two years after her transplant, Hannah continues to grow stronger: She’s a bright-eyed and eager first grader. Last spring, she had a chance to meet her bone marrow donor at the Hendrick Marrow Program 2014 fundraiser for Be The Match and Levine Children’s Hospital.

“When we met Natalie, It was surreal,” said Hannah’s mom, “putting a face to the person who saved Hannah’s life.” Natalie felt just as emotional as Hannah’s mom, “I’m not a crier—but I cried when we met.”

And Hannah? She ran into her donor’s arms, hugging and thanking Natalie. And she’s never stopped showing her gratitude.

Now Hannah calls Natalie at least once a month, sharing her progress. Natalie is every bit as grateful to Hannah as Hannah’s family is to her. “It’s been an incredible experience,” said Natalie. “You don’t realize that you could be someone’s only match. I really did so little, but it meant the world to them.”

This holiday season, help patients like Hannah find the life-saving cure they need. Give a child the greatest gift of all – the gift of life!

One Response to “Near-Tragedy Creates New Family Friendship”

  1. Audrey Boyer says:

    Hannah’s story touches my heart. I too was born with sickle cell disease and have lived a life under constant stress, trying to fight off various infections and paying doctor bills.

    “Be The Match” has been doing a marvelous job reaching out to donors through its registry database that connects people like those have contributed blood to transform people’s lives and give them a second chance at living a better standard of life.

    I am working on a book to help raise funds for research
    and have reached out to you for permission to use Hannah’s story in the book, but I was not given the all-clear to do so. You have asked for a copy of the book, but it is still in development, so that is not possible at the moment. What should I do?

    Thankfully, my husband is healthy and gives blood twice a year, here in Pennsylvania. I have had a few blood transfusions, and my insurance had to pay for the blood each time.

    More people need to know about the work you are doing.

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