Mike Greene’s Battle with Leukodystrophy

Hello everyone! This is Tara, Mike’s oldest daughter. Anyone who knows our family knows we are very private, making this extremely difficult. However, we realize this devastating situation is much bigger than us. Our father was diagnosed with a very rare disease called leukodystrophy. This disease causes a progressive decline of the brain's myelin or “white matter.” Myelin works to insulate and protect axons, which transmit signals from the brain throughout the body. This disease is fatal, and his brain scans are not good.

When our father was forced to close his business in 2020 secondary to COVID pandemic, we remained optimistic he would find something new. We have spent the last several years supporting and managing our parent’s expenses. During this time and for the past 10+ years, his health was declining, but we did not know what was happening. Frankly, his numerous health issues did not make any sense. He has had multiple specialists, countless doctor appointments, surgeries, physical therapy, labs, imaging etc. Leukodystrophy is not something that is routinely “looked” for as it is very much a “zebra” in the medical world, roughly affecting 1 in 1.5 million people. This summer, our family received the horrible news of what he/we are faced with. He has lost independent mobility and cognitive decline and will eventually require end-of-life care. Some expenses are covered by insurance, but so much of his care is not and will not be covered. Not to mention, our parent’s day-to-day living also needs financial support.

Our father, Mike, has always been there for those in his life, often giving the shirt off his back. Now is our chance to return the favor. People close to us have asked how they can help, and this is it. Let’s do what we can to ease Mom and Dad’s stress and financial burden. No amount is too small. We know they would do the same for us.

Please direct any questions to me, Tara and not our parents.

Thank you for reading this and for any help you can give.