Lily’s Story

Site created on September 18, 2019

Our sassy, one of a kind, 3 year old Lily has been through more in the last few months than many will go through in a lifetime.  Since August 2019, she’s been diagnosed with a Congenital Heart Defect, Status Epilepsy, two rare (unrelated) brain malformations, has undergone Open Heart Surgery, had 2 scheduled Brain Surgeries, had multiple hospital stays, and just had emergency brain surgery on June 26th. BUT we have no doubt that she'll continue to rock her multiple Warrior titles, and will continue to show us what strength really is.

THANK YOU for following along with us and your kind words, gestures, and prayers. We are grateful for you!

Newest Update

Journal entry by Ashley Bohnenstingle

Gahhh, I’m so excited that I can finally spill the beans! Lily was approved for a wish through Wishes and More in March, and we have kept it a secret from our children until today! 

Wishes and More is a Minnesota based organization similar to Make a Wish that grants wishes to children with terminal and life-threatening illnesses. 

Today we surprised our children and they did a scavenger hunt to find out that Lily’s wish was granted and we’re going to Disney in 29 days! 

I get all sorts of emotional thinking about this, knowing that Lily even qualifies, but I’m beyond grateful we get to take this “YES” trip with our kiddos who’ve been through so much the last few years. 

I’ll update on all-things medical one of these days, but figured some good news was in order 😊


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