Baby Emery's Rare Disorder Battle

Emery was admitted to the hospital on November 15, 2019 at just 6 weeks old with failure to thrive.

She was diagnosed with the multicentric form of Infantile Myofibromatosis with visceral involvement, an extremely rare condition that causes benign tumors to grow throughout the body. The mortality rate is 70% so she is currently undergoing chemotherapy treatments along with trips in and out of the PICU. She has experienced SVCS twice, a heart stent, abdominal surgery to remove a blockage then ostomy reversal surgery, ARDS, ventilators, many sedations for her 10 central lines, X-RAYS, and CT/MRI scans.

Emery’s parents Autumn and Dylan are from Wichita. Autumn has stayed by Emery’s side this whole time living at the Ronald McDonald House while Dylan drives back and forth every weekend to visit them in KC. The rest of the family visits about once a month or less due to COVID-19 restrictions.

Despite all the adversity they have faced, they’ve remained focused on doing whatever it takes to get this little girl home! Miss Em is a fighter, tougher than anyone I’ve met. I’m sending a big thank you to all of those who have donated to help this family with the cost of living and their 3 hour commute back and forth to KC.

GOING HOME MONDAY, APRIL 26, 2021

UPDATE
We’re home now and enjoying every minute of it! A week after being home Emery has started to pull herself up, crawl, and walk with a walker! She has adjusted just fine, she sleeps in her own bed, sleeps all night, and is happy all day long, she’s amazing. As for me, I just started therapy for PTSD/trauma/anxiety. As a family we are still trying to adjust to home and work life with a special toddler now. We’re having to learn how to do everything all over again as “new” parents. Thanks for showing our family immense support. -Love Autumn,Dylan,Emery,&Family

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