Photography by Fotocrew member Megan Luckie.
Doug and Kasey welcomed their first child, Will, in December of 2011. Like all parents, they celebrated as Will passed each normal milestone in his first year, becoming a sweet and loving little boy. Although Will’s growth began to level off around his first birthday, doctors assured the Wolebens that there was nothing abnormal and he would eventually catch up with his peers.
Everything changed one day in April 2014. Kasey was tending to their newborn daughter Lauren, while Will played in the living room. Kasey watched as Will suddenly fell to the ground – a fall she knew was NOT just a little boy having fun. Kasey immediately called her husband and rushed Will to the emergency room, and in a moment the Woleben’s life would never be the same.
After an MRI scan, Kasey and Doug were shuffled to a conference room with several doctors and given devastating words that any parent fears: rare, progressive, no treatment, no cure.
But these are words Kasey and Doug refuse to accept. See how the love and devotion of these two parents and the determination of one little boy are bringing HOPE to those facing a variety of mitochondrial diseases and raising awareness for this rare condition, Leigh Syndrome.
Information on contributing to Will’s research trial fund is available here.
Thank you Woleben family for sharing your inspiring true story.
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Such a beautiful video and pictures! Will is my nephew and we hope and pray everyday for a cure, he is such a strong, brave boy! Love him dearly ❤️
Wow! My family has a lot in common with the Wolebens. Our little boy, Lincoln (who will be 4 in 2 weeks) was officially diagnosed with Leigh’s Syndrome in July 2015. While Lincoln cannot walk or communicate, his smile and laugh light up the room as it seems Will’s does to just by watching the video. We work closely with UMDF to raise hope, awarenss and a cure! Please tell Kasey to feel free to reach out to me. I am always looking to grow my “Mito family”.
Yours towards a cure,
The Ogonowski famiy