Would I ever wish for our family (or any family) to go through what we did?…Absolutely not.
Do I think it changed us for the better as human beings?…Absolutely
Mia’s story started when she was 1.5 years old (2005). She was having trouble walking, frequently falling more than a typical toddler, eye movements, screaming and shaking when waking in the morning, and trembling hands. This all came on quite sudden and caused us to call her pediatrician. Mother’s intuition caused me to pack an overnight bag for us and make arrangements for her 4 year old brother. We were sent directly to the ER at DeVos from the pediatrician’s office, where we would spend the next 11 days.
CT scans, MRIs, IVs, doctors, specialists, nurses, lab techs, interns, Child Life Specialists, all a part of our initial visit. I remember thinking that this surely wasn’t happening to our baby girl. Lots of prayer, support from our family and friends, and confidence in the place we were inhabiting for the time, helped us through it.
Mia was diagoised with OMAS (Opsoclonus, Myoclonus, Ataxia Syndrome), an auto immune disease where her body was attacking her cerebellum. Coupled with that disease at times comes a Neuroblastoma Cancer Tumor, which DeVos went looking for and found in her left lower pelvis. It was resected through surgery and treatment was started for the OMAS. We were released and sent home with many appointments set up for future months of treatment. What a difference a few weeks make. Mia was having rage attacks, trouble sleeping, and not the same sweet girl.
As unfortunate as those 11 days were, we can’t say enough positive things about the care we received from the DeVos staff. They were so professional, comforting, and they treated us like we’d been friends forever, or even family. We’ve said from day 1, if you have to go to the hospital, it’s a great place to go. There’s no better place than DeVos, and we are so blessed it is so close to our home.
The follow up appointments and treatments continued for the next 5 years. In the middle of that, when Mia was about 3.5 years old, she started having seizures. So our trips to DeVos increased and they were supporting us 100% of the way, doing everything they could to figure out what was wrong. The meds increased, our counter was a pharmacy, with Excel spreadsheets of her drug history and now extensive medical history.
Two years of seizures that we couldn’t get under control with combinations of medications, led us to surgery at the Cleveland Clinic. DeVos didn’t perform this type of surgery in 2010, so they did everything they could to assist us in getting Mia the proper care elsewhere.
We are blessed and elated to report that 6 years later she is seizure free, in remission for the OMAS, and only goes to DeVos for annual checkups.
In the midst of this, we were made aware of Dance Marathon about 4 years ago. And it is a highlight for Mia every year! She LOVES it! Her new college friends are who she wants to have over to the house to hang out! The activities that they have for Miracle families throughout the year, cannot be missed. The 24 hours of the marathon is a time that she can push aside her parents and have a blast. We are so grateful to all the students and supporters of this event. We’ve never been a part of a fundraiser that directly benefits something that was absolutely a blur to us while going through it, but now is ever so important.
Thank you Dance Marathon and DeVos Children’s Hospital!
Amy, Mike, Anthony & Mia Berarducci