Boston Children's Hospital Every Child Fund

by Boston Children's Hospital
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Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund
Boston Children's Hospital Every Child Fund

Project Report | Mar 23, 2023
Boston Children's Hospital Report March 2023

By Michelle Martens | Project Leader

When parents have a sick child, they come to Boston Children’s Hospital to find lifesaving answers. We provide compassionate and family-centered care at the world's largest pediatric research enterprise. Our stunning breakthroughs have already saved millions of lives and, with your help, we can save many more.

 

Your contributions make healthy tomorrows possible for kids like Emmie, Rosie and Frannie. Along with their mom, Tracy, they share a rare, inherited blood disorder but it’s not due to genetics. Tracy and her husband Patrick built their family around a loving and lifesaving choice.

 

“Being born with thalassemia is the best thing that ever happened to me” says Tracy, “It brought me my daughters.” Tracy gets blood transfusions every three weeks for a condition that causes irregular red blood cells and severe anemia. Those with the most serious form of the disorder need regular transfusions to survive. When Tracy and Patrick decided to start a family, they learned there were lots of orphans in China with life-threatening conditions—like thalassemia, and without proper medical care many pass away.

 

The couple saw Emmie’s picture on an adoption website. Her sweet little face looked up at them with the word ‘thalassemia’ written below. Tracy shared the 2-year-old’s medical file with her hematologist at Boston Children’s. He confirmed she had a severe form of the disease that would require lifelong blood transfusions and lots of specialized care. He also said he’d be delighted to welcome a new patient.

 

The day after they flew home, Tracy and Patrick brought their daughter straight to Boston Children’s. Emmie’s hemoglobin levels were dangerously low but her medical team was ready. Transfusions required her to be tethered to an IV pole for six hours or more. Luckily, child life specialists were also ready: to blow bubbles to distract Emmie as an IV was inserted; to provide freshly cleaned toys or snacks; to give Tracy a moment to step away and cry because it was so hard to see Emmie in pain.

 

Adopting a child with significant medical needs wasn’t easy. But watching Emmie grow and thrive with the expert care she got at Boston Children’s gave Tracy and Patrick the courage to adopt a child with thalassemia again…and again. 

 

One year after the next, they found Rosie and then Frannie in Chinese orphanages. As each joined the family, they followed Emmie to Boston Children’s. Now, every 21 days, Emmie leads the way when they visit for lifesaving transfusions of red blood cells. She helps her little sisters be brave.

 

Tracy and Patrick feel lucky to live near the best place in the world for their daughters to get pediatric care. They hope that someday gene therapy will be a cure—and know Boston Children’s researchers are working on it. But for now, they’re happy because Emmie, 13, Rosie, 12 and Frannie, 9, are healthy, always giggling and happy to be together.  

 

Watch this video to see how you can change the lives of kids like Emmie, Rosie and Frannie.

 

Your gift empowers us to continue caring for children and families both here in Boston, and around the world. Thank you for your support of Boston Children’s Hospital!

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Organization Information

Boston Children's Hospital

Location: Boston, MA - USA
Website:
Facebook: Facebook Page
Twitter: @BostonChildrens
Project Leader:
Korinne Durando
Boston , MA United States

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