“We know that a rare disease diagnosis is a race against the clock.”
– Patient advocate Kasey Woleben of McKinney, TX
Will Woleben was hitting all his developmental milestones as he entered the toddler years. He was walking, active, social, and curious, says mom Kasey Woleben of McKinney, TX. Then around age 2 – for no clear reason – he started to trip. One day he collapsed.
From there, Will’s health declined rapidly. Doctors diagnosed a SURF1 deficiency, one of the many genetic mutations responsible for a rare mitochondrial disease called Leigh syndrome.
“It was such a difficult time in our life, because I…