When Ellie and Mike found out their daughter, Ellie, had a rare form of leukodystrophy called leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation, or LBSL for short, they were devastated.
LBSL is a rare genetic disorder that does not allow those afflicted with it to produce a protein essential for production of myelin, a critical substance for proper functioning of the brain and nervous system. Myelin provides insulation – much like the plastic coating around the wires in your home. It is also essential for transmission of signals from the brain to the rest of the body.
LBSL is incurable and degenerative and Mike and Ellie were told there was nothing they could do.
They refused to just sit down and take that prognosis, and sought second opinions which lead them to the Kennedy Krieger institute and an additional mitochondrial diagnosis.
Since then they have set about researching and fundraising to find a cure for Ellie.
Today, they have a website A Cure for Ellie and raise funds as a not-for-profit organisation which go towards research at the Kennedy Krieger Institute. They, currently, have a goal of $231,000.00 and are sitting at $205,135.97 of that goal.
Please listen to their story and donate if you can.
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