Region: North America

  1. Camp INNcredible Makes Summer Fun

    Posted by on September 26, 2019 in | No Comments

    Summer camp activities, concerts in the park and family nights at the ball park — that’s the type of magical summer fun you provide to seriously ill children and teens staying at The Children’s Inn this summer. “When children have to spend their summer participating in clinical trials at the NIH, you make that experience […]

  2. Avery’s Health Was Hanging by a Thread

    Posted by on August 28, 2019 in | No Comments

    It was supposed to be a fun evening out. Avery, her older sister and her parents were eating spaghetti at a favorite Italian restaurant when Avery suddenly started complaining of neck pain. By the end of the meal, the little girl was in tears, and her family rushed her to the emergency room. At first, […]

  3. You Help Tina Face the Unimaginable With Courage

    Posted by on July 24, 2019 in | No Comments

    Tina was born premature, with her little belly distended. After doctors drained 2 pounds of fluid from her abdomen, the 33-week-old infant was left weighing barely 3 pounds. “Doctors knew Tina had a rare type of disease, but they didn’t know what kind,” Sue, Tina’s adoptive mom, recounts. “It took 18 months to get the […]

  4. CAR-T Therapy – Producing Customized Treatments for NCI Patients

    Posted by on June 6, 2019 in | No Comments

    Today, most children diagnosed with acute lymphoblastic leukemia (ALL), the most common childhood cancer, are cured. Yet some young patients don’t respond to chemotherapy, and in others, the cancer returns, sometimes again and again. Looking for new options for these patients, scientists have unveiled cancer immunotherapy, which strengthens the body’s ability to eradicate cancer using […]

  5. Trial Shrinks Xavier’s Tumors

    Posted by on May 21, 2019 in | No Comments

    Xavier was born with an incompletely formed leg bone and a large number of dark spots all over his body. “I called him my little leopard,” his mom, Seddra, remembers. But even though her son’s pediatrician had noticed his spots and knew about his malformed, bowed leg, he never mentioned they could be signs of […]

  6. Family of Amber, 9, Thanks You for Your Support at 2019 NIH Rare Disease Day

    Posted by on April 15, 2019 in | No Comments

    It’s been a big year for Amber, 9, of California. In February, she celebrated the one-year anniversary of her gene therapy injection at the NIH Clinical Center and helped welcome First Lady Melania Trump to The Children’s Inn. On Feb. 28, she played a major role in highlighting the importance of gene therapy advancements in […]

  7. You Lift Amber’s Family Up

    Posted by on February 1, 2019 in | No Comments

    When Amber started walking at 13 months, her mom noticed Amber could not step properly on her left heel. Their pediatrician suggested the little girl would grow out of it – but instead, it got worse. Eventually, genetic testing revealed Amber has a highly rare, incurable genetic disease called giant axonal neuropathy, or GAN. The […]

  8. You Help Abram’s Family Find Answers

    Posted by on December 28, 2018 in | No Comments

    Abram looked like a healthy baby. But frequent infections and fever spikes of up to 106 degrees frightened his parents and baffled his doctors in St. Louis, Missouri. As Abram grew, the fevers came every four to six weeks, coupled with excruciating joint pain that made it difficult for him to walk or even play. […]

  9. You Make Childhood Possible for Jordan

    Posted by on October 9, 2018 in | No Comments

    Jordan seemed unusually clumsy. At age 3, she tripped over her own feet regularly, especially when running. When Jordan also began dragging her feet, her parents knew something was wrong. After countless medical appointments, a geneticist suggested Jordan has a highly rare genetic illness called Giant Axonal Neuropathy (GAN). The incurable disease progressively impacts children’s […]

  10. More Than a Decade of Visits to The Inn Allows Green Family to Help NIH Advance Research Into XLA

    Posted by on August 30, 2018 in | No Comments

    Nothing about having children came easy for Sonia and Colby Green of River Forest, Illinois. They endured years of failed fertility treatments, a miscarriage and a stillbirth. When Sonia gave birth to a healthy baby boy, the couple was over the moon. But their joy quickly turned to concern. Though Harrison looked like a healthy […]