A Palestinian Girl’s Life Was Saved After Getting Treatment for Her Apert Syndrome in Kentucky

According to a story from wave3.com, time was running out for Leyan Albazzour, who is nine years old. Born in the Palestinian city of Ramallah, the treatment for her Apert syndrome was not available there. After she was examined by pediatric neurosurgeon Ian Mutchnick, who was volunteering in the city three years ago, he was able to make arrangements for Leyan to travel to the U.S. to get the surgical procedure she needed.

Apert syndrome is a genetic disorder that is defined by deformations of the hands, feet, face, and skull. A person affected by Apert syndrome has skull sutures that begin to close too soon, when the brain is still growing. Surgery is necessary to prevent the early closure from impairing the development and growth of the brain. This can be fatal over time if left untreated. Unlike many rare diseases, Apert syndrome is usually easy to diagnose because of the distinctive physical characteristics. To learn more about Apert syndrome, click here.

Leyan would ideally have gotten surgery for her skull when she was around a year old, and the delay in getting adequate care has caused pain and delays in her cognitive development. Dr. Mutchnick was able to collaborate with nonprofit organizations in order to arrange travel and funding for Leyan and her mother Montaha. The procedure that helped Leyan was called cranial vault expansion, which basically enlarged her skull to normal size and gave her brain the space that it needed. Bashar Masri, who interprets for Montaha, says that Leyan is already starting to get better. He says that she is much calmer and is able to listen more attentively.

While their life in politically unstable Palestine may have its own challenges, her mother is incredible grateful that she was able to get treatment for her daughter. It was unclear how much longer she would have survived without intervention. While it required traveling thousands of miles away from their homeland, the journey was absolutely worth it. People with rare conditions in developing countries or in parts of the world marred by conflict often have little opportunity to get help or even get an accurate diagnosis.

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