08/27/2026
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A few weeks ago Jackson had genetic testing done and was diagnosed with Alpha Mannosidosis. This is an extremely rare genetic disorder - between 1 in 500,00 and 1 and a million chances of this happening. Only 200-300 people have ever been diagnosed worldwide. Jacksons little body lacks the enzyme requires to breakdown sugars at a cellular level. This explains Jacksons frequent illnesses, Gross motor delays, scoliosis, craniosynostosis, etc. Left untreated, Jackson will decline cognitively. He will lose the ability to walk, the ability to speak, etc. We met with the Director of Genetics at Children's Mercy where we learned Jackson is the first patient to be seen with this condition which unfortunately means they dont have alot of information. After connecting with some amazing people with the same condition, we ended up being seen at the Fairview Masonic Children's Hospital in Minneapolis, MN. In the next few weeks, Trey, Jackson, and I will be relocating to Minneapolis where Jackson will be receiving a bone marrow transplant to help reverse some of the symptoms and receive the enzymes he needs in order to stop the cognitive decline. Our sweet boy will have to undergo chemo to get rid of his existing bone marrow in order to receive the new. This will require us to stay in Minnesota for 4-6 months. And without our Livie girl.
We are terrified but we have the BEST people around us. If any of you see Livie in the next few months, please surround her with all of the love. Jackson is the happiest boy and oh so strong. We will come out of this better than ever! God's on our side!
Please pray hard friends ❤️
Jackson Schimmel is one in a million in our hearts, and has been diagnosed with a very rare genetic disorder that only affects about one in a million people.This means Jackson's little body lacks the enzyme required to break down sugars at a cellular level. This explains Jackson's frequent
