Formerly Conjoined Twins Mark 1st Birthday at Children’s National

twinsEarlier this month, 1-year-old twins Tyler and Tyson celebrated their first birthday at Children’s National with their siblings, parents, grandparents, and great-grandmother. Their family calls them “miracle babies” for good reason — they were born conjoined, attached at their chests and bellies. They shared a liver, and Tyson needed heart surgery.

At two months of age, Tyler and Tyson were separated in a complicated surgery that was aided by a plastic model of the boys’ entire midsection made with a 3D printer. Their birthday party was a reunion with the Children’s National doctors and nurses who were part of their live-saving surgery.  Watch the story on NBC4.

 

Hyundai Offers Hope to Children Battling Cancer

HHW BlogHyundai Hope On Wheels and Washington-area Hyundai dealers on Sept. 19 awarded Children’s National Health System a $250,000 Hyundai Scholar Hope Grant for pediatric cancer research. The grant will support the work of pioneering researchers Drs. Catherine Bollard and Kirsten Williams, whose efforts will help high-risk patients with acute leukemia or Hodgkin’s Lymphoma after bone marrow transplants.

“Hyundai Hope on Wheels is absolutely critical to the Oncology Center at Children’s National,” said Dr. Jeffrey Dome, Division Chief of Oncology. “Hyundai’s strategic commitment to supporting childhood cancer research has enabled us to develop highly innovative treatments. Our goal at Children’s National is to cure cancer and enable survivors to lead happy, healthy, and productive lives. Hyundai shares our vision, and that is why we are so grateful to be one of their partners, bringing hope to families.”

Children’s National is one of 36 recipients across the country to receive a 2014 Hyundai Scholar Hope Grant. In all, Hyundai Hope on Wheels is awarding $9 million in research grants this month in honor of National Childhood Cancer Awareness Month. Children’s National, a longtime partner of the organization, has received $960,000 from Hope On Wheels since 2010. See Facebook photo album.

Race for Every Child Tops $1 Million

The second annual Race for Every Child on Sept. 13 raised more than $1,050,000, topping its goal of $1 million. Donations will continue to be accepted at raceforeverychild.org until November. The event attracted 4,663 participants at Freedom Plaza in downtown Washington, DC. See photos, videos, and media coverage. Watch a news clip from Fox 5.

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Race chair Carrie Marriott, top fundraiser Bret Baier, Dr. Bear, and Dr. David Wessel, co-chief medical officer at Children’s National.
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The top fundraising team, Wishes for Elliott.
The top finisher, Jacob Spendelow of Arlington, Va., with a time of 16:29.1.
The top finisher, Jacob Spendelow of Arlington, Va., with a time of 16:29.1.

 

Boy Born with Rare Heart Defect Defies the Odds

boyCameron Howard recently celebrated his second birthday with a normal, functioning heart. That’s amazing considering he was born with Transposition of the Great Arteries, a serious heart defect that can be deadly. With this defect, the aorta and pulmonary arteries are developed in the wrong places — and because blood is not oxygenated, a child can die within minutes if it’s not fixed immediately.

Doctors at Children’s National operated on Cameron when he was just 3 days old, and while his heart is working normally, he will still need to be monitored throughout his life.

On Saturday, look for Cameron and his family as they walk in the second annual Race for Every Child on Saturday. Sign up at www.raceforeverychild.org — tomorrow is the last day to register!

Read the story from Fox 5, “Boy Born with Rare Heart Defect Defies the Odds.”

Former Cancer Patient Will Race for Every Child

matt grossmanThe Washington Post on Wednesday profiled Matthew Grossman, who survived a brain tumor at age 13 and is now a college graduate pursuing a career in clinical psychology and music therapy. A singer and guitarist, he also performs for the children who are still being treated at Children’s National. “I know that power of music is so incredibly important,” he said. “I needed it when I was going through cancer. They need it, too.”

A week from today, he will join more than 4,000 other runners and walkers in the second annual Race for Every Child. “I can’t donate a ton of money to the event,” he said. “But what I can provide is attention. That’s what I’m hoping to do by playing guitar, telling my story, and being involved in the race.”

Read more about Matthew and get information about the Race for Every Child.

Years of Care Make a World of Difference for Maryland Teen

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Colbe Henderson and his family will be at the starting line for Saturday’s Race for Every Child, giving back to the health system that has treated him since he was 5 weeks old. Now 16, Colbe was diagnosed with sickle cell disease and then, at age 4, had a stroke and lost all strength in the right side of his body. Through two years of physical and speech therapy, he learned to walk and talk again.

Wednesday is the last day to register for the Race for Every Child, a 5K run and walk, with a 100-year Kids Dash. Sign up today!

Read the story from Fox 5, “Years of Care Make World of Difference for Maryland Teen.”

Volunteers Needed for Race for Every Child Sept. 13

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If you don’t want to run or walk 3.1 miles next week, you can sign up as a volunteer for the Race for Every Child! We need 100 volunteers to help with packet pickup, the Kids’ Dash and other children’s activities, water stations, food and drinks, and much more. Sign up on the race volunteer page.

Or register to run or walk at www.raceforeverychild.org.

Researcher Receives Grant from Foundation Created to Honor Gabriella Miller

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On Aug. 26, the Smashing Walnuts Foundation awarded its first grant of $100,000 to Dr. Javad Nazarian, a Children’s National researcher who focuses on diffuse intrinsic pontine glioma (DIPG), which comprises about 15 to 20 percent of all pediatric brain tumors.

The foundation was created in honor of Gabriella Miller, who was diagnosed at age 9 with DIPG and died less than a year later. Her brain tumor was the size of a walnut, and she and her family began smashing walnuts with a frying pan as a symbolic gesture to represent smashing her tumor.

“Almost 100 percent of children diagnosed with DIPG die within a few months of diagnosis,” Dr. Nazarian said. “There has been very little research done on this type of tumor, and what we are witnessing here is that the families have come to support the research.” He hopes to gain a better understanding of how the tumor forms and spreads.

Gabriella achieved more than most people do in a full lifetime. Through her advocacy work, she inspired members of Congress to pass the Gabriella Miller Kids First Act, which appropriates funds to the National Institutes of Health for pediatric brain cancer research.

See the Washington Post article, “Gabriella Miller’s Cancer Research Foundation Awards $100,000 Grant.”

1 Mountain. 2 Dedicated Sisters.

mtkNatalia Luis and Cidalia Luis-Akbar are on a mission — to reach the summit of Mount Kilimanjaro, the highest free-standing mountain in the world. But they are driven by more than the physical challenge — they are using the effort to raise awareness and funds to provide earlier, more accurate diagnostics during high-risk pregnancies and help set a new standard of care for even the most fragile newborns.

“We are committed to improving the lives of children now and in the future, in our community and around the world,” they say on their fundraising website. “All babies deserve a healthy start, and fetal medicine will dramatically improve the health and quality of life of children.”

Natalia and Cidalia are members of the Children’s Hospital Foundation board and are generous donors to the fetal medicine program. By supporting the sisters’ Mount Kilimanjaro climb, you will help create a holistic fetal monitoring system that will benefit children in the nation’s capital, across the country, and around the world.