Emlynn’s medical journey began before she was born. Her parents were surprised to learn they were pregnant with their fourth child, and it was during their 12-week ultrasound when doctors had found extra fluid on Emlynn’s brain. After an initial appointment with a fetal diagnosis clinic, Emlynn was diagnosed with a neural tube defect called anencephaly.
“[The doctors] came in after the ultrasound - and it’s a pretty stark room - and you hear something that no one should ever have to hear… and that’s that your daughter has a neural tube defect called anencephaly,” Amy, Emlynn’s mother explains. “It’s essentially a hole that developed in the back of the baby’s skull. Most babies only live a few days or a few hours if they survive at all.”
Emlynn was born on February 16th at the University of Iowa Children’s Hospital. Her parents reflect on the worrisome times and share the relief they felt when Emlynn survived birth and they heard her cry for the first time. The fear and worry that her family had carried for so many months could finally be let go, even if only for a moment.
At just three days old, Emlynn underwent her first surgery for shunt placement, and at 15 days old, she underwent another surgery that repaired the anencephaly and removed the sac of extra fluid from her brain. Shortly after her birth, Emlynn was also diagnosed with Dandy Walker Malformation. Because of her medical conditions, Emlynn struggles with daily seizures and only functions at the developmental level of a six-month-old child.
For children diagnosed with neural tube defects, the chances of survival are very low. Emlynn’s family share that they are deeply thankful for each and every day that they are able to spend with her, and the low chances of her survival only make their time together more meaningful.
As soon as Emlynn’s family learned of her eligibility for Make-A-Wish, they immediately knew what would bring her the most joy: a visit to Walt Disney World. “When Emlynn was young, and even now, the only thing that would calm her down was Mickey Mouse,” Amy shares. “For whatever reason, whenever she was upset, if we turned on Mickey that would do it… and so it only made sense to go visit Mickey!”
On the very first day of their trip, Emlynn and her family were greeted by Mickey, Donald and Goofy. Looking back on this moment, Emlynn’s family said that Mickey Mouse was the first character to walk up to them, and Emlynn looked at him with absolute joy. It was in this moment that her mother saw how truly happy Emlynn was and knew that that was exactly where they were meant to be.
Emlynn’s wish experience provided an opportunity for their family to visit Walt Disney World together, and to do so for the very first time. Emlynn’s family was amazed by the help and support from Make-A-Wish® Iowa and the effort they put into making her wish the trip of a lifetime.
“[Make-A-Wish] really wants kids to have the best experience from sunup to sundown,” Amy remembers. “We were surprised to find that Give Kids The World had rides that were accessible… Emlynn had never been on rides before. We were actually able to strap her in and she absolutely loved it. We would’ve never known, we would’ve never seen that reaction from her, if we had never taken this trip. This was an incredible experience for all of us. It let us check out of life and experience Disney together. For a whole week, Emlynn got to be a kid, just have fun, enjoy being around other people and just laugh, smile and soak it all in.”
Emlynn’s family emphasize their gratitude to Make-A-Wish Iowa and the donors who help make wishes come true for children with critical illnesses. They wish for everyone to understand the difference a wish makes for these kids and encourage everyone to support Make-A-Wish in any way they can.
