Her mother writes “McKenzie is 3 years old with Mitochondrial Disease. It is a rather rare condition and we moved from Orlando to be closer to the right specialist. Basically her mitochondria has an issue producing ATP (energy). Of course every organ in the body needs ATP so as you can imagine, she has issues with many of hers. She also has a form of Epilepsy called Lennox Gastrout Syndrome. Meaning she has 3-4 different types of seizures and cannot be controlled by medication. The Mito Disease is the biggest situation though. It is killing more children each and every day yet due to it being relatively new to science, there is no cure and only speculations as far as what meds help to relieve some of the pain. It’s scary. McKenzies Facebook page might help you a little more. Www.facebook.com/
And more from the facebook page “Only at 18 months and after her daddy and I having to scream at her pediatrician and neurologist to do some blood work, did we start to get some incite as to what we were about to get involved in. MRIs were done, evaluations had, many trips to the lab driven and even tho we had those results, no one could tell us what was going on with our little girl. At one point, we had 9 specialist with all having different diagnosis’s and opinions as to what was happening but no one would honestly say it was “this” or “that”. Our only real diagnosis we managed was Autism (which we later found out that mitochondrial disease can cause these types of symptoms in children).
Things started getting more and more frustrating, if McKenzie got sick with a simple stomach bug, it would land her in the hospital for 3-5 days. If she caught a simple cold then it would turn to pneumonia. Her food never digested (still does not) and many other situations. Why would NO ONE help us? WHY was our little girl sleeping 16-18 hours a day? WHY was she having absence seizures? WHY would acid from fruits burn her skin to the point of lesions when she wet her diaper? So many things were happening and no one could tell us WHY!
July 2012 we found someone who could. McKenzie had one of the many Mitochondrial Diseases. We were devastated as most these diseases are fatal before childhood has entered into teen years (also more adults are being diagnosed, as research shows more about the disease). Her metabolic specialist was able to tell us why her test results were abnormal. What her symptoms meant, and what our next plan of action was going to be. To this day we are still doing blood work to find out more information (getting a final diagnosis in Mito is something that does not gets done over night). Many families wait years (like us) to get that final note. But the more we know, the better!! Though we are fully prepared to never know all aspects of Kenzies medical makeup, every little bit testing helps.
For this reason our family has relocated to Atlanta, to be closer to doctors who are familiar with mito and its role on these kids and adults lives. It has been stressful with most of December being spent in doctors offices or hospitals with McKenzie, but we believe it was the safest move we have ever made.”
There’s no mentioning McKenzie without mentioning her older sister, Maelynne. They come as a pair. I have never seen a more loving pair of sisters. I always give the option of including a sister or sisters in a memorial princess session, and there was no question of having both girls here. McKenzie stumbles, Maelynne is there to hold her up. McKenzie is having her turn for photos, Maelynne is waiting patiently cheering her on. McKenzie is getting dressed in her princess dress and matching headband, Maelynne was right there telling her how beautiful she looked. McKenzie is a sweet, smiling little girl. I left this session and cried going home in the car. I simply cannot imagine a world without McKenzie’s sweet self in it. She so vibrant and ALIVE. I was thinking about how much I love my sister and how horrible it’d be to have this pair lose each other. Due to McKenzie’s tiredness and energy issues, I opted to make this a more stationary session than my normal ones, all photos taking place within about 100ft of each other, so I was able to incorporate some fun things like the canopy and the flower jars. We blew glitter and had a blast!