<div>-Our mito journey-

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<div>Have you ever heard a story so rare that it seems like it was all made up? Well, we can’t make this one up.

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<div>Our story is about two people who needed each other at a time in their lives when they were at their lowest and became best friends who fell in love. Kenny and I both had kids from previous relationships, and we blended our lives together, not knowing what God had in store for us.

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<div>*Sometimes His plan is not our plan…*

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<div>For 8 years, it was just me and Jacey (my daughter) against the world. I was a single mom who was just doing my best. I was content with being independent and doing it on my own until God sent Kenny to me. A few months of laughs and love turned into an unexpected baby boy on the way.

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<div>Kayden James Bennington was born on January 4th, 2016. And my entire heart and world was full. -So I thought.-

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<div>Again, God's plan was not our plan…

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<div>When Kayden was about 5 months old, he started having some feeding issues. They called it “failure to thrive,” so to Children’s Hospital we went for testing and answers for our perfect baby boy. A few days later, they found out that his liver was in failure, and they couldn’t figure out why. Trying to fix his liver caused harm to his kidneys, and trying to fix his kidneys led to one thing after another. He ended up with an infection that turned septic, leading to a fatal brain hemorrhage that took our perfect baby boy from us on July 7th, 2016. A domino effect of trauma that we didn’t have answers for yet. What happened to our perfect baby boy? Why couldn’t the doctors “fix him”?!

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<div>Genetic testing was finally done but all too late.

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<div>We later learned that Kayden had a rare genetic disorder called POLG mitochondrial disease that affects so many different areas of the body. It is so rare that only 0.01%, 1 in 10,000 of the population have it. POLG mitochondrial disease is a rare genetic disorder. It is a highly rare, often fatal condition.

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<div>When we finally got this unfathomable news, we were advised by genetics at UAB to not “have any other children together.”

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<div>-But again, God's plan is never our plan-

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<div>I was 6 weeks pregnant with Savana Kay Bennington, who was born on November 12th, 2017. I told myself that God's plan is never wrong and He knew what He was doing, even though we were terrified of the unknown future ahead of us. Genetic testing was done following her birth, and we were devastated to find out that she had the exact same genetic mutation that took our perfect baby boy from us and that could potentially take our baby girl as well. But again, God had a different plan.

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<div>God gave His only son, and so did I.

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<div>I gave Kayden back, and He sent Savana to help heal my heart. I told myself that if He needed her back, I would love her for as long as He allowed me to, and I would give her back and be strong enough to handle what I didn’t understand.

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<div>But again, God's plan is bigger than I could have ever imagined.

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<div>Savana has continued for eight years to astonish all of the doctors who told us that she would not live longer than six months with her condition.

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<div>-Now, she is in critical condition at Children’s Hospital fighting for her life.-

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<div>Savana is the biggest miracle our family has ever known. For years, we thought they got it all wrong; she is too perfect to have a deadly disease. But two years ago, in March of 2024, she had a right hemispheric stroke and was diagnosed with epilepsy. Thankfully, with therapy and rehab, she overcame what the doctors thought was impossible. She has always outshone herself. Before then, Savana was your normal child, had a few developmental delays but overall a healthy little girl. Fast forward to now, March 17th of 2026, she got sick and ended up having another stroke, but this time it’s the opposite side of her brain, a left hemispheric stroke that has been detrimental for her. She had respiratory failure and had to be intubated for a while. But again, she continues to astonish the doctors with her strength and resilience. Unfortunately, this time has been very different from the last time. Savana cannot speak. She cannot walk. She is having a hard time perceiving everything, along with what the doctors are calling myoclonus jerks, which makes it very hard for her to participate in her therapies and meet the rehab goals. Although she has improved a little bit since the stroke, she still doesn’t understand what is happening to her. Agitation and depression are our biggest enemies these days.

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<div>-There is nothing worse than watching your child go through something so traumatic and not knowing how to fix it for her.-

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<div>Trying to trust God's plan has been difficult for our whole family.

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<div>We have been at Children’s Hospital in Birmingham for 32 days now. It will be our new home for the unforeseeable future. We are praying that with time she will be able to emerge from this horrible situation and be able to return to her happy self. The doctors here at Children’s are unsure if that will be possible. But I KNOW that this is not something that will keep Savana from the plan God has for her. She has a BIG purpose to fulfill, and it’s our job to make sure she has the chance to show us all that with faith, anything is possible.

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<div>*Our mito journey is not done*

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<div><strong>We need all the help, prayers, and support that Savana deserves. She needs a home that is better suited for her new daily life. A home with wheelchair accessibility, and a big yard to hopefully one day be able to play in again. Our older, tiny trailer is not a healthy place for her anymore. My goal is to make that happen before she is discharged from the inpatient rehabilitation program here at Children’s Hospital.</strong>

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<div>Mitochondrial disease is not spoken about enough. I hope with our story we can make sure to spread awareness for all the children who have fought this battle and lost and for those who continue to fight the war within their bodies. I pray every day for a cure! I hope for our story to spread far and wide. We believe God has a plan for us all, even when we don’t understand it. We will continue to trust Him to lead us through HIS PLAN.

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<div>+FOR VANA WE FIGHT

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Susan Jinright

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