Alexia’s Journey

Alexia has what has been described as an “ultra rare” neuromuscular disease. As of this writing her disease “name” is yet unknown. She began to lose motor function in her hands and arms at three and a half, and by six she could no longer use her hands or arms at all. Alexia has just turned seven and is now unable to walk on her own without full adult support. #rarelife for us is ever evolving, but our goal remains same- to make sure Alexia can do (and does) ALL that she wants to, whatever it takes. We’ve got great teamS working with us.

Our Team at Michigan Medicine is amazing and have worked hard to both teach us how to parent and care for a child with a rare disease and to advocate for her dream, whatever it takes. https://www.uofmhealth.org/conditions-treatments/brain-neurological-conditions/neuromuscular-disorders/locations

Alexia has, also as part of her team- the UDN (Undiagnosed Disease Network) We were VERY lucky to have her case chosen as a part of research on rare diseases. Whether we get “answers” or not- we’re helping Alexia, and maybe other kids in the future too. Want to know more about UDN (I’d NEVER heard of it!) ? https://undiagnosed.hms.harvard.edu

Last, and for SURE not least- we’ve been blessed with a “Wish” for Alexia by Make A Wish Michigan . We’re headed to Disney soon to see and do ANYTHING we can – Princess Alexia (and Prince Max) get to run the show. I never dreamed we’d be a “Make a Wish” family- but I’m SO grateful we are for Alexia’s sake. We could NEVER of afforded to create this experience for Alexia (and Max) . If you can support Make a Wish- Please do so in Alexia’s honor! https://wish.org/michigan

Meet Max

Meet the rest of us!

We’re the Zendler’s . We’re also the Ormsby’s . A blended plus two family of ten. His four, my two, and our two “Little’s”. Currently Nolan is 25, Brennan is 22, Parker and Evan ( at least for a few more weeks) are both 19, Abby is 16 and Landon rounds out the blended crew at 15. Want to know more about us ? I’ll get to that eventually❤️

• You take the good, you take the bad…October 3, 2022
• Make A Wish CountdownSeptember 29, 2022
• Up, up and away !September 20, 2022
• Relationships Matter…September 15, 2022
• That’s what friends are for ..September 13, 2022