 When Rob and Cassandra Jeffes were told their seven year-old son Jarrod had been misdiagnosed with cystinosis, they were initially relieved. However, when doctors informed them they didn’t know what was causing the calcium build up in Jarrod’s kidneys, they were left with more questions. Jarrod is one of 80 patients participating in the National Institutes of Health’s new Undiagnosed Disease Program headed by Dr. William Gahl, who is an expert on rare genetic diseases. Rob and Cassandra are thankful that Jarrod was chosen for the study out of the thousands of children that applied. The Jeffes also say they’re thankful to be able to stay at The Children’s Inn while Jarrod undergoes testing to try and solve the mystery of his illness. Staying at The Inn allows the family to be together, including Joshua, Jarrod’s older twin brother of two minutes - Josh is quick to point out. Having the family around helps Jarrod cope with days full of poking and prodding at the NIH’s clinical center, knowing that when he gets “home” to The Inn, his brother is waiting. When asked if they’re best friends, Josh and Jarrod look at each other for a moment and then respond with grins in unison “we’re best brothers”. “They’re not used to being apart. Just when Jarrod was getting tests, Josh would ask the whole time how his brother was doing and if Jarrod was ok without him,” Rob says. Cassandra added that the whole environment is family oriented and she appreciates all of the activities, which gives her sons a chance to forget the reason they’re at The Inn. Jarrod is a budding artist and the family has spent hours in the art room making a variety of different projects. Both of the boys also enjoy sports and video games, and squealed with excitement when they learned the newly renovated game room was now home to two Nintendo Wii stations. “You know, Jarrod cried the whole time in the hospital, but he gets here and forgets about everything,” Cassandra says.
The Colombo’s journey with MEN 2B began in November 2007, when Gaia was being treated for what doctors believed to be an intestinal virus. After several weeks of finding no confirming results or answers, they received the diagnosis on December 7, 2007. Gaia had a very rare form of a thyroid tumor that typically metastasizes to the lungs, kidneys and liver. Later that month, she had surgery to remove her thyroid. Doctors in Piza suggested that the Colombo’s enroll Gaia in a study at the NIH and on May 31, 2008, the family made their first trip to The Inn. Since then, they have come to the NIH for a week of treatment every two months. The Colombo’s have received wonderful news—doctors see no metastasis in Gaia’s body and her tumor is half the size that it used to be. Now they will only have to return to the NIH once every four months. Stafania says she feels like she is at home when they are at The Inn. “I think children heal faster than they normally would here,” she says. She describes getting prepared for their first trip to the NIH, saying that is was terrible because they did not know what to expect. What they found, though, was a place where people are so hospitable and kind. Gaia enjoys when the therapy dogs visit The Inn, BINGO and the arts and crafts activities. Her parents appreciate the family suppers and the grocery trips provided by volunteer drivers. Stefania says that Gaia calls The Inn a second home. She loved Camp INNcredible last summer and participated in many fun activities throughout that program. “She has made so many friends here,” says Stefania. Back home, Gaia can be found quite frequently in the swimming pool. She enjoys her computer and playing video games. She sings in her church choir and loves musicals. Stefania and Luca have taken her to the theater in Milan for performances. Stafania says with a grin that Gaia also loves shoes and handbags and spending time with all of her friends. Luca says that they will continue returning to the NIH and staying at The Children’s Inn for at least the next five years. “I can get organized the way I want. They have everything you need here. I feel very safe,” says Stafania.
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