Writers Loretta and Dave McGovern are hoping for a happy ending when it comes to research for their son, Cavan. In April of 2018, Cavan was diagnosed with Kearns Sayre Syndrome (KSS). Over the past year, Cavan’s eyelids began to droop considerably, causing many to point out how incredibly exhausted he looked. The drooping (ptosis) became so severe that Cavan had to tilt his head back to see. Cavan also was not growing or putting on weight because he was not producing growth hormones. He struggled physically, often growing fatigued very quickly with exercise or after basic actions, like sitting up at his desk in school.

After trips to ophthalmology and neurology, Cavan was sent for a brain MRI which showed a considerable change in his brain matter since his last brain MRI 2 years before. The brain scan indicated KSS–a disease they–and many of his doctors–had never heard of.  They were told to get Cavan to a hospital for a heart evaluation within 24 hours. It was the most terrifying period of their lives. KSS was confirmed this past April through genetic testing.

Since diagnosis, Cavan has had surgery on his eyes to help correct the ptosis so that he can see, and he has lost hearing, requiring hearing aids. He must take supplements, daily shots of growth hormone and be followed closely by specialists for his heart, lungs, ears, eyes, etc.  The McGoverns are fortunate to live so close to New York City and be able to see one of the top mitochondrial specialists in the world at the mito clinic at Columbia Presbyterian Hospital.

After learning about KSS and its impact on patients like Cavan, Dave and Loretta committed to raise $150,000 to fund a research grant to provide the world’s top mitochondrial scientists with the support they need to perform breakthrough research on KSS.   Amazingly, the McGovern’s raised more than $100,000 in just 83 days.  “Because of the McGoverns’ dedication to this project, UMDF is now able to move fast to connect to the best research that may provide  a breakthrough with KSS,” said Beth Whitehouse, Director of Development for UMDF.