JACKS STORY

Jacks journey with Lissencephaly has been difficult for him, it has also been beautiful and full of so many blessings we couldn’t have anticipated. Jack was born with a rare brain disorder, caused by an abnormal gene coding in the TRIO gene. After genetic testing, we found this genetic change was not passed down from us, but was “random” in Jack. The miscoded gene caused Jacks brain to be formed smooth, instead of having typical bumps and gyri you see when you think of a brain. Because of the smoothness, Lissencephaly, his brain isn’t able to complete seemingly simple connections with the rest of his body.. affecting his vision, ability to speak and ability to control his body. It also causes uncontrolled seizures, a disorder called Lennox-Gastaut syndrome. He is on 5 seizures medications. We expected most of this when we got the diagnoses when he was 1 day old, after his first seizure in the PICU.  But we didn’t realize the significant resources and support he would actually need.

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Around 6 months of age, it quickly became apparent to us that Jack was going to need more assistance than we anticipated. Supportive seats to help him sit up, positioning tools, a bath chair, a standing frame to help him stand. These specialty items come with a drastically marked up price tage compared to typical baby/children items. We felt overwhelmed as we looked as prices and how much it was actually going to cost to keep Jack comfortable and healthy. We began applying for grants to help cover whatever insurance wouldn’t, there can be a huge gap between what insurance deems necessary and what children need to be successful & comfortable in their own world. We held our own fundraisers with events and t-shirt sales. We have received gifts from family friends which helped send Jack to intensive therapies in Denver, where we uprooted our lives in Kansas for 3 weeks at a time. 

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Since then, we have continued to search for grants and fundraise for Jack.  It is not lost on use how incredibly fortunate we are to have been able to maintain a dual-income family with an extensively supportive community. The goal of starting this foundation is to help other families feel the support and love we have felt for Jacks entire life.