If you think of the impact that one life can have on this world, you might think in terms of time. How much can you do within the set number of years you have here on Earth? Willy only had 11 years to make his impact and make an impact he did! We were told that Willy would likely only live two years. We spent those first two years loving him and waiting for him to pass.

 

When it was clear that he was going to live longer than that, we decided to go about the business of living. Throughout his 11 years on Earth, Willy, guided by his parents, advocated for his peers in several significant ways. His first act of advocacy was testifying with his mom (really he just had to sit there and look adorable), in a State of Michigan Congressional Hearing with regards to funding decreases in healthcare designed for children with severe, life-limiting illnesses.

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After testing the political waters on a state level, Willy participated in the 2015 National Certified Rehab Technology Leadership and Advocacy Conference. The group we were with made 220 congressional visits in 3 days and it was whirlwind. Willy visited several Congressional Representatives and their staff to show them the face of people who desperately rely on specialized rehab technology to live.

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Perhaps Willy’s most significant legacy will be that of his work with pediatric do-not-resuscitate orders (DNR). Willy was born with lissencephaly, which is considered a terminal diagnosis. In the early years, seizures and respiratory issues were his major culprits. The combination of access to fantastic healthcare, faith, wonderfully supportive school staff, good parenting, and a little luck, he always healed up and bounced back. His cycles of sickness and health just became a part of the normal family routine.

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However, in 2013, his health had declined to the extent that every time he was sick, he came back to us healed but less whole. He was still ‘healthy’ and going to school but his quality of life was slowly diminishing. It was then that we decided to focus on quality instead of quantity of life. Part of these refocused efforts included a DNR.

The process of writing Willy’s DNR order was painful and we didn’t expect problems with his school district. However, as we found out, there is no continuity within Michigan school districts as to the policies surrounding pediatric DNR orders. Thus began a four-year process of attempting to change the laws surrounding this issue.

After bills to correct this situation passed unanimously in the Michigan Senate, a Lame Duck session didn’t support enough time to get the bills passed through the House. We will continue to try until we have solid pediatric do not resuscitate legislation to protect all kids in the State of Michigan and their right to an education that fits.

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Willy was diagnosed with pneumonia right around Halloween in 2015. True to his DNR, he was given antibiotics to try to fight the infection but his body was tired and did not respond. Willy passed away 11/5/2015 at home in bed with me.

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The impact that his life had will continue to have ripple effects for decades to come as we forge ahead with the DNR legislation. The lesson his life taught us is that every life, no matter how long or what challenges are involved, has meaning.