Erin’s Story

Site created on June 29, 2020


On June 24th 2020, Erin woke up with a tingly left hand. As the day passed on, She started developing more unusual physical issues that would require medical attention. By the time Erin got to the Sanford ER, She couldn’t stand and her left side was almost completely numb. She was dizzy, nauseous, and had a bad headache.

After a CT scan, the ER doctor let us know that Erin had an extremely rare condition known as Congenital Platybasia Deformity and Secondary Hydrosyringomyelia. Left unaddressed, Erin was facing paralysis, a heart attack or even death. With this condition, a malformed bone in her skull was impacting and deteriorating her brain stem. . Normally, the bone grows straight but in Erin’s case, grew in a “S” shape obstruction. This bone anomaly put years of pressure on the brain stem and further caused a leak of Cerebrospinal fluid into her spinal chord; causing the symptoms she was experiencing and placing her life at risk.

Erin was immediately air lifted to the University of Minnesota Masonic Children's Hospital in Minneapolis where a team of doctors were waiting for her. Erin was prepped for brain surgery scheduled for the next morning.

During the 12 hour procedure, the doctors removed the obstructing bone to relieve the pressure off of the brain stem. Unfortunately, the procedure was not without complications. Erin suffered a mini stroke and had blood loss to her 6th Cranial nerve causing a deficit in her left eye.

Erin is scheduled for another surgery later this week to stabilize her skull. During the second surgery, the surgeons will remove a small part of her hip to graft into the space of the removed bone and stabilize the skull with a rod and screws. Erin will be immobilized for at least 6 weeks depending on the speed of her recovery. She will also need extensive rehab after she’s released from the hospital.

Erin has a very long road ahead of her, but she is strong and brave. We do not know what the future holds, but we are so thankful to the amazing team of doctors, nurses, and support staff of the Masonic Children’s Hospital in Minneapolis.

Erin is 14 and going to be a Freshman at Century High School. She is the daughter of Lonna and Mike Hill, and the Granddaughter of Pat and Gayle Bren of Dickinson and Jean Hill of Cincinnati OH.

A Go Fund Me page

https://gf.me/u/yfupr5

and Benefit Account have been set up for Erin.

American Bank Center
1151 3rd Ave West
Dickinson ND 58601 (Or all Bismarck locations)
Erin Hill Medical Account

Thank you so much for your support for Erin. It means the world to us!! ❤️❤️

Newest Update

Journal entry by Lonna Hill

Hi Everyone!
I know it’s been several weeks since my last update so I thought I would share Erin’s progress since we’ve been home.

When we left Minneapolis we had no idea how things were going to go for Erin. She was very unstable on her feet. She got tired very quickly. She coughed almost all the time which lead to debilitating headaches. It took almost two hours to give her a shower. There were lots of tears and frustration. Erin had a few, too 😬. This experience taught me a few things. 

First, medical professionals have some of the toughest jobs around. And I know for sure I’m not cut out for that line of work. The docs and nurses and therapists and helpers that took care of Erin will always hold special places in our hearts❣️

Second, the love and patience that just kind of surfaces is pretty incredible. I have never known such joy from watching my child accomplish a simple task that she had to relearn. I know how lucky I am to still have her. I will never again take that for granted.

And last, Erin is loved... and has a tremendous amount of support from all of you that have been following her journey. She has been asking a lot of questions about the last couple of months because she’s missing big chunks of her memory- not a terrible thing considering what she’s been through. It’s a huge comfort to be able to fill that void for her by showing her all of the cards and messages and pictures of Team Erin shirts! Instead of having  to tell her about the pain she was in we can show her the love and support she received. Thank you just doesn’t seem like enough to show my gratitude to all of you❣️

We have a long road ahead. There are things surfacing for Erin that wouldn’t have even been on her radar before this. But I know for sure she will get through this. Tomorrow is another milestone... high school starts for her. It’s definitely not the way I imagined it would be but I’m guessing that’s true for everyone starting high school (and probably any other grade). 

We head back to Minneapolis for her one month post op appointments on September 20. We’ll be there most of the week because of all the departments where she has appointments. I hope to update again before then. 

Sending all of you love and wishing you a wonderful week!!

TEAMERIN 💙💜💙💜
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