It took three trips to the doctor’s office and consults with four different providers for Valerie Flynn to finally get to the bottom of her son’s suffering.
Thomas’s confluence of symptoms was puzzling: a high fever that wouldn’t go away for five days, all-over itchiness with a head-to-toe rash; bloodshot eyes and absolute exhaustion.
“Thomas’ doctors kept telling me it must be a virus and to give him Benadryl for the itch and Tylenol for the fever, but those did nothing to help,” says Valerie. “That’s very scary as a mom, to see all these professionals stumped. I was that crazy mom who brought him back three times and called multiple times a day. I knew something was seriously wrong and just wanted them to figure it out and help him. I knew something was seriously wrong and just wanted [Thomas’ doctors] to figure it out and help him.”
Five days after his first office visit, Thomas, 5, was diagnosed with Kawasaki disease, a rare and serious illness characterized by inflammation of the blood vessels. Kawasaki affects many different areas of the body: hands, feet, whites of the eyes, mouth, lips, throat, lymph nodes and skin. Without quick treatment, Kawasaki can damage the heart’s coronary arteries.
Thomas’ pediatrician recommended his family seek care at Boston Children’s Hospital and immediately referred them, sending the family straight to the emergency room.
“I thought we’d come in to a mound of paperwork and it would take hours to be seen,” says Valerie, “but it all happened so quickly because our doctor had called ahead. I was glad the doctors took Thomas’ case so seriously and got right to work to help him get better.” …
On September 24, 2015, in a sixth floor room at Boston Children’s Hospital, 5-year-old Logan Lesselroth pressed the button that started the transfer of his newly harvested blood stem cells to his 3-year-old sister, Gianna.
“This,” Gianna told him, “is a gift from your body.”
The path to that moment and the stem cell transplant’s potential to cure Gianna of her relapsed leukemia was anything but straightforward. Logan has a genetic condition called medium-chain acyl-CoA dehydrogenase deficiency (MCADD), which makes it difficult for his body to convert sugar to energy. Would his metabolic disorder be passed to Gianna? Would the disorder make it too risky for Logan to have his stem cells harvested?
Diagnosed with acute lymphoblastic leukemia at the age of 4½ months, Gianna achieved a remission that lasted two years. In May 2015, the leukemia was back. With that, Mike and Marissa Lesselroth sought options for their daughter in their home state of Florida and beyond. “We talked to her doctors in Florida, and they agreed that coming to Dana-Farber/Boston Children’s was the best choice for Gianna because they offered a lot of treatment options for relapsed leukemia,” Mike says. …
A few months ago, Bonnie Godas, a Braintree mother of two, called a friend at the Massachusetts Statehouse asking a simple question. That friend phoned a friend at the Massachusetts Department of Transportation.
Several phones calls later, Bonnie heard the news. On May 21, Boston’s iconic Zakim Bridge will be lit purple in recognition of Lupus Awareness Month.
“I’m excited. I’m grateful and thrilled that Charlotte is doing so well,” says Bonnie. “It’s so important for parents to know about lupus because it can mask itself as other conditions like fibromyalgia and rheumatoid arthritis.”
Lupus is an unpredictable and diagnostically challenging automimmune disorder. The immune system mistakenly attacks parts of one’s own body. This can damage organs, especially the kidneys and the blood vessels, if it isn’t diagnosed and treated.
Bonnie is well aware of how difficult it can be to diagnose lupus. Five years ago, her daughter Charlotte, now 19, started experiencing minor aches and pains and stomach issues. Her symptoms worsened, and Bonnie brought her to a local specialist.
Charlotte underwent a series of tests, including a liver biopsy and colonoscopy. “We weren’t getting answers,” recalls Bonnie.