When your child receives a rare diagnosis that needs instant care, you don’t have time to contemplate finances and plan out your budget. You just have to act. That was the case for Clara McLean and her family.
Clara’s Story
At the age of 4 Clara was diagnosed with leukodystrophy/leukoencephalopathy (a rare brain disease) and DDX3X syndrome. So far, she is the only known patient with DDX3X syndrome in the world.
Her local doctors didn’t know how to help. They hadn’t ever treated someone with her disease. These were some of the top neurosurgeons in the nation and they nonetheless came back with the answer – we don’t know.
Since Clara hadn’t exhibited any of the normal symptoms of her diagnoses, including difficulty/regression walking, eating, speaking, and breathing, the news was a shock to the family and they didn’t have time to prepare.
Within one week they had to go to Pittsburgh from their home in Los Angeles. Of course these last minute cross-country flights were expensive. To make matters worse, Clara’s dad lost his job right after Clara’s news. The family was stressed to say the least, but they kept pushing on. They had no choice.
Miracle Flights
Thankfully, while they were in Pittsburgh, Clara’s family learned about Miracle Flights. This nonprofit was first founded in 1985. It provides free flights anywhere in the United States for patients needing medical treatment they can’t receive in their home town. They fly the patient and up to 2 caregivers along with them. Since their founding they have provided over 130,000 flights to patients and families in need. That’s approximately 600 flights each month.
Clara’s family took their first flight with Miracle Flight in October of last year.
You can visit Miracleflights.org to learn more about this organization, donate, or make a request for your own family. You can also call 800-359-1711.
As for Clara, she is continuing to dance, do gymnastics, and her horse therapy as researchers continue to search for her cure. While things have been far from easy, the family is hopeful.
You can read more about Clara’s story here.
