Mikayla ‘Mickie’ was born on October 26, 2011. She was three months old when she had her first seizure. By nine months old, she had failed over eight anti-seizure medications and was diagnosed with Intractable Epilepsy and Infantile Spasms. Each month that passed, she fell further and further behind her peers in development. I knew deep down in my soul something was gravely wrong. In the war that we were waging, I wondered if we would ever get answers. When we met Dr. Mary Zupanc, a Pediatric Epileptologist at CHOC Children’s Hospital of Orange County everything shifted. She gave us the answers we had been seeking, even the ones we didn’t want to hear. The day before Mickie’s first birthday she had brain surgery to remove the Parietal, Occipital and Temporal lobes of the left hemisphere of her brain in order to combat the seizures. The goal was to preserve the quality of her life, knowing she would never be ‘normal’. She is now a sassy ten-year-old fashionista and is seizure free. She still takes anti-seizure medication daily. Mickie goes to dance class, takes voice and piano lessons, and loves swim class. Mickie is the definition of a miracle and we want to create more success stories and miracles like Mickie.
Why Mickie’s Miracles?
I never imagined that I would be in a place where God would use me to be the voice for others. Looking back, I wish there had been more people to guide us through the nightmare of our daughter’s epilepsy. Mickie’s Miracles is providing the tools for families to advocate for their children in order to stop fighting a ghost.
Mickie’s Miracles advocates for parents to get their child an urgent diagnosis and the highest level of care at Level IV Pediatric Epilepsy centers, increases awareness about the catastrophic dangers of pediatric epilepsy, and fights for legislative change to reduce barriers to care and research funding.
- Early Diagnosis is critical. Pediatric Epilepsy is catastrophic to the developing brain. Epilepsy is a progressive disease. Early Intervention is essential and a matter of life and death. Urgency is imperative.
- If a child fails the first form of epileptic treatment, they must be seen by a Pediatric Epileptologist. These doctors have a higher level of understanding epilepsy than a neurologist or pediatrician.
- Parents should always trust their instincts. No one knows your child better than you. If you believe something is wrong, do not give up until you have an answer.
- When the pediatrician, specialists and neurologists exhaust their medical expertise, a child must be referred immediately to a higher level of care at a level 4 epilepsy center.
- Stop fighting a ghost, know what you’re up against. Advocate for the highest level of care so that your child can receive a necessary diagnosis.
Join us today by making a donation to help us reach more families, join our mailing list for updates and new blogs, let us know if your child or someone you know has Pediatric Epilepsy or if you would like us to come and speak to your organization, please contact us today!