Remarks as Delivered at the Children’s Inn 19th Annual Gala

Good evening. Thanks, Cokie, for that very warm introduction. I would also like to thank the members of Congress, their spouses, and all of you here for your support.

I'm delighted to join you in celebrating the Children's Inn at the National Institutes of Health.

To paraphrase John Wilmot, 2nd Earl of Rochester and friend of King Charles II, before I got married, I had four theories about raising children. Now I have four children and no theories.

Fortunately, the good men and women at the Children's Inn know a few things about what children need, and they have spent the last seventeen years providing loving care to those vulnerable people.

At the Children's Inn, children sick from cancer, lung, blood, bone and growth disorders, mental illnesses, and HIV infection travel from all over the world with their families to receive the best, the most innovative, and most compassionate care available. The Inn offers young people a reprieve from their struggles. It provides them with a home away from home, and helps them concentrate on working with NIH doctors and researchers to find healing.

I'd like to share a story with you about one of the Inn's residents to give you a sense of what the Inn does.

Hannah is a four year-old girl from California. She's sweet, energetic, and loves to sing and dance. Her mother, Shannon says that she shines as "the light of so many lives."

Hannah was diagnosed with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis. That's a rare condition that affects the kidney and liver. Shannon and Jon, her husband, lost their first daughter to the same disease when she was only two weeks old.

Hannah also had congenital hip dysplasia, which has been surgically corrected, and hypotonia, or low muscle tone, which has caused some developmental delays.

During their first visit, Shannon and Jon were nervous about bringing their then 18 month-old daughter for "tons of tests" at the National Human Genome Research and Institute. They didn't want to stay in an unfamiliar environment.

"On our first night, we were welcomed with a potluck dinner from the community," says Shannon. "It was wonderful. We were given everything we needed to feel comfortable. The staff was so kind and loving - we really felt like family.

"It's an incredible place to stay with a sick child. Everything was there for us and we didn't feel like outcasts - just one of the many families going through their own experiences."

This summer, during Hannah's third annual visit to the Children's Inn, she discovered a cache of Disney princess costumes in the playroom. As the father of a four year-old girl, I can imagine how much she liked it. Sure enough, dress-up promptly became her favorite activity at the Inn, her mother tells us. Then Hannah found a toy medical kit. Now she had the chance to be the doctor instead of the patient.

"She knows how everything works - from the stethoscope to the blood pressure cuff," Shannon says. "In the Inn's playroom, she gets to be a doctor instead of a patient."

Shannon and Hannah find ways to have fun together during the little girl's week-long visits. One evening, the mother and daughter joined another Inn family - whose children suffer from the same condition as Hannah - for dinner and a movie in Bethesda. They saw Hairspray, which Hannah loved.

Though she has to endure a battery of tests each year to monitor the progression of her disease, Hannah, now in preschool, still looks forward to coming to the Inn. "She doesn't remember the hospital - she remembers the fun parts," Shannon says.

A few years from now, Hannah will probably need a kidney transplant. Fortunately, both her parents are potential matches. "We were hoping Hannah wouldn't need a transplant until she was older, but it may be sooner rather than later. For now, we enjoy each day and relish each moment," Shannon says. "We know how precious life is and how easily it can be taken for granted."

Unlike the National Institutes of Health, which is generously supported by Congress, the Children's Inn is a private and non-profit organization. It depends on your support.

Thanks to you, the Inn is able to tend to the spiritual and emotional needs of very sick children while NIH takes care of their physical needs.

Your generous commitment helps make these children's dreams come true. Thank you.