Our tenth Inspirational Family is the McEwen family. Elana is a thirteen year old girl from Bloomfield Hills, MI.
Elana has a rare, incurable, life threatening disease called Primary Ciliary Dyskinesia (PCD). Primary Ciliary Dyskinesia is a genetic disorder where the tiny hair-like structures (cilia) that are supposed to move mucus out of airways either move abnormally or do not move at all. The mucus accumulates, causing blockage and chronic infections in the lungs, sinuses and ears. The chronic lung infections cause scarring of the lung tissue, leading to permanent damage. Less than 500 people have been diagnosed with PCD but many more are thought to be misdiagnosed.
PCD is also stealing her hearing which has required 13 sets of ear tubes and multiple surgeries to reconstruct her ear drums. PCD also affects the reproductive system.
Before her final diagnosis, the first 4 years of Elana’s life, she lived in and out of hospitals. She saw over 20 different doctors across 3 states. Finally, when Elana was 4, the doctors had narrowed down 2 possible diagnoses. They determined she either had a laryngeal cleft (hole in larynx) or a rare disease called Primary Ciliary Dyskinesia. The final diagnosis was she had both PCD and the laryngeal cleft. While the laryngeal cleft was surgically repaired, her battle with PCD will be lifelong. As of today, Elana has been hospitalized over 70 times and had 38 surgeries, which she will need many more throughout her lifetime. Most recently she has been hospitalized for 26 days due to her lungs collapsing from pneumonia.
Her daily regimen consists of 3-4 breathing treatments which are spread throughout the day. It also includes an assortment of antibiotics and steroids to fight the infections, all of which take over an hour to administer every day.
Despite everything Elana has been through, and continues to go through, she is always happy. She is known at school as the “girl who is always smiling.” She has a positive attitude and perseveres through many situations even though she’s not feeling well. Some days, attending school is exhausting, but Elana does the best she can to make it through the day. She wants to be a doctor when she grows up so she can help other kids just as so many doctors have helped her. Despite needing so much care herself, Elana always takes time when she is hospitalized to cheer up other, younger patients who are having a rough time. She also spends time helping support other charities as well as the PCD Foundation. Elana is such a selfless girl, even though she could easily wallow in self-pity. She inspires everyone she comes in contact with.
Elana is the daughter to Karen and Brett McEwen.