Twenty-five million Americans currently suffer from a rare disease, but 4-year-old Clara McLean from Los Angeles is the only one in the world with her exact medical diagnosis.
Parents Share Story of Medical Journey in Advance of Rare Disease Day (February 29)
LAS VEGAS, Feb. 20, 2020 /PRNewswire/ -- Twenty-five million Americans currently suffer from a rare disease, but 4-year-old Clara McLean from Los Angeles is the only one in the world with her exact medical diagnosis.
Clara has a rare and incurable brain disease called leukodystrophy/leukoencephalopathy. She is also the only known person in the world with her specific variant of a genetic disorder known as DDX3X Syndrome.
For Clara’s parents, the diagnosis came as a shock: Blonde and bubbly, their little girl showed no symptoms of the fatal condition, which typically include a regression of basic skills such as walking, speaking, eating and eventually breathing. Similarly perplexed were local neurosurgeons—among the top in the nation—who acknowledged they had never treated a patient with Clara’s condition.
“Our local doctors said they’d only ever read about white brain matter disease and would need to find us somewhere else to go for treatment,” says Clara’s mother, Jessica. “The expectation of travel came with the diagnosis.”
Within a week, the family was on a 2,500-mile flight to the Children’s Hospital of Pittsburgh for specialty care. Cross-country travel is expensive and—compounding the family’s stress—Clara’s father lost his full-time job shortly after her diagnosis. Medical bills and living expenses quickly mounted to the point of financial catastrophe.
“There’s a dread of ‘how is this going to work?’ But you don’t get to ask those questions. We’re in a race against time,” says Jessica. “You mortgage the house and you go.”
While in Pittsburgh, Jessica learned about Miracle Flights. “I overheard this mother’s relief talking about how an organization had helped her family,” she recalls. “I asked, ‘What is this miracle?’ She said, ‘It is a Miracle. It’s Miracle Flights.’”
Miracle Flights is a national nonprofit that provides free plane tickets to patients who need specialty medical care not available in their local communities. The organization also covers the cost for companion flyers, including up to two parents, guardians or caregivers. The McLeans boarded their first Miracle Flight in October 2019.
While specialists in Pennsylvania conduct cutting-edge research to help find a cure for this ultra-rare condition, Clara enjoys her dance and gymnastics classes along with horse therapy and time with her older sister. The family continues to seek answers—and they know distance won’t stand in their way.
To help Clara and other children with rare conditions continue their medical journeys, or to request a Miracle Flight for your family, visit miracleflights.org.
About Miracle Flights
Miracle Flights is a 501(c)(3) nonprofit organization that provides free medical air transportation to children and adults via commercial airlines throughout the United States. The organization, founded in 1985, has provided 130,638 flights and currently books more than 600 flights per month. To request a flight, learn more or donate, call 800-359-1711 or visit miracleflights.org. Like us on Facebook and follow us on Instagram.
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SOURCE Miracle Flights
