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Pink Powder

Owen's Story

While The Legacy Foundation has been a vision of the founders for a long time, we wouldn't exist if an extraordinary little boy hadn't come into our lives. It was he who brought the founders together and set the course for what was to come.​

 

Let us introduce you to Owen.

Owen Henri Turner

May 17, 2009 - September 20, 2021

Owen Henri Turner came into the world in much the same style as he led the rest of his life: rather dramatically. He was born at 35 weeks following a staggering 55 hours of labor, and immediately whisked away to the NICU to receive treatment for respiratory and movement issues. There were other signs of things to come too, like some cardiac concerns, facial irregularities, and the fact he wasn't willing to eat or open his eyes. 

The geneticist was called in and a full workup was ordered, but while we waited for the results we learned our sweet little lad had suffered a traumatic brain bleed and was having seizures. Things seemed so dire and we spent much of Owen's first week of life in a mess of tears and helplessness. 

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Owen, 2009

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Owen, 2014

A light was shone once we heard that the microarray results from his genetic testing were in. Finally, some answers! The geneticist walked us through everything, and we learned that although we always suspected our kids would be unique... well now we had the paperwork to prove it.

Owen was born with a rare chromosome disorder so unique that no other case has ever been identified in any medical literature or database in the world. Yes, ever. He was the very definition of a unique child, and boy... didn't he go on to live up to that reputation.

The list of conditions he battled during his 12 and a half years with us would take up most of this website, but a selection of the diagnoses include ADHD, asthma, atelectasis, autism, cerebral palsy, cleft palate, developmental delays, grade II intraventricular hemorrhage, Lennox Gastaut Syndrome (epilepsy), non-verbal, PFO, multiple pneumonias, prematurity of birth, ptosis, tethered cord, and many many more, all of which were likely caused by his chromosome disorder.

Our son was unique in so many other ways as well though. He was incredibly quick at reading people, and would know within seconds of meeting people exactly how far he could push their buttons. He would constantly be underestimated by well-meaning but naïve strangers, and delighted in making them do his bidding before revealing he was perfectly capable of retrieving every single pink crayon he'd flung across the room himself.​

He always had a mischievous gleam in his eye and a warm hug at the ready for his favorite people. He was obsessed with the texture of paper, the color pink, and music spoke to him like it was a secret language only he knew. He was funny, sassy, bold, and the bravest child we've ever met. Nothing ever scared or intimidated him, and he faced challenges head-on like a charging bull with a waving red flag.

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Turner Family, 2016

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Owen, 2020

But life with him wasn't easy. Owen was stubborn and could be aggressive at times, and his medical complications meant that hospitalizations and expensive therapies were a frequent occurrence. Support was often hard to come by, and high-quality skilled care was essentially non-existent for most of his life. Stress was high, time was short, and resources were limited. But love, humor, and strength were in abundance, and those got us through it all.

The Turner family moved from Wisconsin to South Dakota during the summer of 2016, and found themselves in need of a new pediatrician for Owen and his younger siblings Jasper, Josie, and Felix. This physician needed to be something special: they of course had to have the typical dedication to practicing high-quality medicine you expect, but also have an interest in children with complex needs, and the same kind of twinkle in their eye as our oldest child's. We were incredibly fortunate to meet Dr. Michelle Schimelpfenig during our search, which ultimately began a life-long family friendship and partnership that grew into The Legacy Foundation.

Owen passed away on September 20, 2021 at 11.40am. It was a cold and rainy day, and after he was gone we commented that we were glad the weather was gloomy, because it seemed unfair that the rest of the world should get to enjoy a bright and beautiful day while we were experiencing the worst heartache of our lives. 

 

That summer had been very challenging for him, with many illnesses and hospitalizations, including a 21-day PICU stay in August. But he'd pushed through each one of them, so when we learned his doctors were recommending hospice care, the shock that rippled through our family - and during Covid-19 lockdowns, no less - was immense. Owen died at home in his parents' arms just five days after that recommendation, surrounded by love and light and Mickey Mouse, and it was the most beautiful and peaceful experience we could have wished for. His short life was painful and chaotic, but his passing was peaceful and pain-free. And may we all be that lucky in the end.

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Owen, 2021

Family of six people with two adults, an infant, and three young children. One child is in a wheelchair. The season is fall.

Turner Family, 2019

Owen left his mark on our family and on everyone he met. He was such a character that people still tell us about the silly things he did and their favorite stories of their time with him. We could not have let him just become part of our past, because he continues to very much be a part of our present and of our future. We established The Legacy Foundation in his honor and Owen's Outfitters in his name, and now you now a little more about him, we hope you'll agree that it was the perfect way to ensure his memory lives on.

Eleanor and Mike Turner

Parents of Owen, Jasper, Josie, and Felix Turner

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