- The Washington Times - Wednesday, December 11, 2019

Santa Claus rode through Montgomery County on Wednesday, escorted by police on motorcycles, to raise money for families of children living with rare or serious illnesses whose best hope is to undergo clinical trials and research studies.

The holiday-spirited motorcade started at the 5th District police station in Germantown and concluded at The Children’s Inn at National Institutes of Health in Bethesda, a nonprofit that provides free lodging and support services to families with uncommon diseases.

“Everyone wants to be able to spend the holidays with their families, their friends,” said Laura King, The Inn’s senior director of community engagement. “Unfortunately, for our families, that’s not an option. We have families that have to stay here and undergo their children’s medical treatments.”

Montgomery County police Officer Bobby Ladany dressed up as Santa Claus, for the bike ride which he said brings attention to a “worthy cause.” He and about 25 other officers participated in the motorcade.

“When it affects kids, it hits the heart,” Officer Ladany said. “I couldn’t think of anything cooler in the world than to ride a motorcycle dressed as Santa Claus for kids, some of whom are terminally ill, just to bring a smile to their face.”



The hospitality lodge can house up to 60 families with children living with serious medical conditions.

Lina A., a mother of three who asked to omit her last name, flew from Dubai, United Arab Emirates, with her family this month so that her son Zane could undergo surgery at the National Institutes of Health this week to remove a tumor on his adrenal gland.

Lina has a rare genetic disorder called Von Hippel-Lindau (VHL) disease, which causes tumors and cysts in different parts of the body — most often the eyes, lower part of the brain, spine, pancreas, adrenal glands and kidneys.

The tumors are typically noncancerous, but they can cause serious or even life-threatening complications. People living with VHL are at an increased risk of developing kidney and pancreatic cancer.

Last year, Lina learned that she has VHL and that all three of her children inherited the condition.

Along with herself, two of her children, Zane and Luana, have had to undergo surgeries to remove tumors from their adrenal glands. Her third child, Jude, has developed a small tumor on his left eye but has not needed surgery.

“Nothing hurts more than seeing children suffer,” she said. “As a parent, my biggest nightmare is to have a sick child or to lose a child.”

“In my case, I face an unknown future with three children,” she said, her eyes filling with tears. “Some days, it’s a nightmare. But some days, you’ve got to equip yourself with hope.”

The free lodging, services and activities at The Children’s Inn let Lina and her family to stick together during surgeries, distract them from medical procedures and help financially support them when they have to travel from out of the country. Her family has traveled to The Inn from Dubai three times now for treatment.

On Wednesday, Lina’s children and other young patients at The Inn visited with Santa, Mrs. Claus and other police officers, and then “shopped” for donated presents and participated in holiday-themed arts and crafts.

The Inn serves more than 1,500 families and young adults each year. Patients at The Inn participate in more than 300 clinical trials conducted by the NIH.

The nonprofit is based on an idea by Dr. Philip Pizzo, former chief of pediatrics at the National Cancer Institute. He sought to create a place where families could stay together for free while their children undergo treatment at the NIH. It opened in June 1990 with 37 sleeping rooms, and has expanded to accommodate more families.

When asked about her future hopes for the patients at The Inn, Lina said, “Cures for all these beautiful children.”

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