Princesses for a Day

Derek and Heather Carr host surprise tea party for sisters with cystic fibrosis 

When newborn Alexandra Diaz was diagnosed with cystic fibrosis in 2010, the respiratory problems that plagued her older sister began to make more sense.

At Valley Children’s Hospital, Dr. Reddivalam Sudhakar took one look at the soft tissue swelling at the end of Kassandra Diaz’s fingernails and knew she probably had the same genetic disease. Tests confirmed his suspicions.

Fast forward nearly six years, and the Diaz sisters today don’t seem much different than other youngsters who love Legos, games and princess parties. Thanks to the highest-level care at Valley Children’s Cystic Fibrosis Center, the sisters from Atwater are managing a life-limiting and incurable disorder that can cause lung infections and seriously affect other organs in the body.

“We appreciate everything that Valley Children’s has done for us,” said Hildeliza Diaz, the girls’ mother. “They have helped us a lot.”

Carr surprise

That relationship goes far beyond medical care. Recently, the sisters were treated to a surprise tea party with Valley Children’s supporter and pro quarterback Derek Carr and his wife, Heather. The girls were crowned as princesses, and scenes from the party are featured in a new Valley Children’s video.

Both Kassandra, 11, and Alexandra, 5, loved the chance to wear colorful dresses and fairy wings, eat candy and other treats and share the experience with two friends. Kassandra was especially excited to meet Derek.

“It was the first time that I had ever met someone famous,” Kassandra said. “We talked a lot and they were really nice. He told us: ‘Thanks for letting my wife and me hang out with you.’”

Jorge Diaz, the girls’ father, called it “a great experience for them and something they weren’t expecting.”

Multidisciplinary approach

The Diaz sisters are among the approximate 170 patients seen each year at Valley Children’s Cystic Fibrosis Center. The Hospital is recognized as a Cystic Fibrosis Foundation accredited center and is affiliated with the CFF Core Center at Stanford Medical Center.

While participating in clinical research with the foundation, Valley Children’s Cystic Fibrosis Center follows a multidisciplinary team approach that brings together pediatric lung specialists, nurses, respiratory therapists, social workers, dietitians and more.

“Cystic fibrosis is one of the most common genetic diseases,” said Dr. Sudhakar, Valley Children’s medical director for pediatric pulmonology and the cystic fibrosis program. “When I first started here, the life expectancy was 25. Now, the average life expectancy is 40 and there are people who are living longer than that.”

For the first time ever, he added, more adults than children are now living with cystic fibrosis.

Early detection

A defective gene causes the disease. When both parents carry the gene, there is a 25 percent chance that their child will have cystic fibrosis.

The disease is characterized by thick mucus that can clog the lungs and afflict other organs like the pancreas. Lung infections are common because the mucus is difficult to expel by coughing, for example, and bacteria can thrive and multiply in that environment. In the pancreas, mucus can hamper the work of digestive enzymes so that food and nutrients are poorly processed and absorbed.

Dr. Sudhakar said early detection is important because “people who are diagnosed early tend to live longer and with better quality of life.”

Research on the disease is continuing to evolve and improve. “Going forward, they are coming up with new drugs that show promise to control the basic defect,” he said. “Things are very encouraging for the cystic fibrosis community.”

Both Kassandra and Alexandra were diagnosed in 2010. Newborn screening meant that Alexandra was quickly diagnosed. However, that screening wasn’t common when Kassandra was born. Up until then, her respiratory problems were treated mainly as asthma.

Grateful family

Shortly after Alexandra was born, the family was referred from Merced to Valley Children’s. Kassandra spent several weeks at Valley Children’s Hospital then, and our doctors continue to monitor and treat both sisters.

"When cystic fibrosis patients follow their treatment regimen, it helps tremendously with their quality of life and prognosis,” said Dr. Mary Anne Tablizo, a pediatric pulmonologist who sees both girls at our Cystic Fibrosis Center. “But even with the best parents and the best treatments, sometimes they can get sick."

It’s about a 45-minute drive from the Diaz home in Atwater to Valley Children’s. On longer visits to the Hospital, Kassandra sometimes passes the time by playing games with her parents, watching television and working on craft projects. Alexandra often amuses her sister and parents with funny faces.

At home, both girls take medication to control the disease such as an enzyme supplement to aid in digestion. They also do daily breathing treatments and use a vibration vest that helps loosen mucus in their chests.

Most of the time, they act like typical kids. Kassandra likes to play volleyball and soccer, build architectural Lego masterpieces and eat fruit crepes and enchiladas. Alexandra creates hearts, stars and birds from Play-Doh, plays hide-and-seek and likes pancakes, doughnuts and pizza.

The family is grateful for Valley Children’s medical treatment and responsive staff.

“I feel good,” Kassandra said. “The doctors are good and they help me a lot.”