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Lilly's Story
Lilly's story began on July 18th, 2008; Lilly was the seventh child in our family of 8 children and adored by everyone. As a toddler, Lilly was in and out of the hospital with undiagnosed illnesses. By the age of 7, Lilly was hospitalized with Meningitis, and they determined that she had Chiari and Syringomyelia.
I had been diagnosed with Chiari and EDS several years prior to us discovering Lilly had it. After Lilly’s diagnosis we then found out that several of her siblings also have been affected.
We were referred to a neurosurgeon, and our nightmare began. Lilly had her first surgery, we had no idea what to look for and we trusted a well-known hospital. There was no testing for comorbidities, and we soon found out that there should have been.
We next sought out a specialist who only works with patients with these issues, and her subsequent surgery (spinal) was scheduled a few months later. Soon after her spinal surgery, she required a cervical fusion and then a VP shunt. Multiple shunt revisions and tethered cord releases were now her life. Lilly had IV fluids numerous days a week for Dysautonomia, medications for her Mast Cell disease, and Immunotherapy for her weakened immune system. We tried everything, constantly feeling like we were fighting an uphill battle. Lilly always remained positive and had a smile that would light up a room and eyes that would melt you. She adored animals, especially her dog Cookie. She loved Jesus, her family, Mario Kart, Minecraft, cupcakes, and the color red.
In early 2020 after a decent time without hospitalizations, Lilly's shunt began to fail while we were trying to manage things at home. Lilly now faced another surgery in June 2020. We thought nothing of it; heck, she had been through so many revisions we just wanted her to get through it so she could spend the summer swimming, another favorite of hers. June 4th is the last day my girl walked. The revision didn't go well, and she ended up with a brain bleed. It was very sudden and traumatic. We lost our Lilly in the early hours of June 8th, and our world was shattered. There is no way to describe the nightmare our family is going through not having Lilly here. We had an angel in our family, and we miss her beyond words.
May Her Memory Be Eternal
"Her absence, like the sky, is spread over everything." C.S. Lewis
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