A Miraculous Journey – Warrior Baby Noah’s Story
A Word from Kristie Griess, CEO & Visionary Founder, Mickie’s Miracles
This testimonial provided by Warrior Mom Gladys and Warrior Baby Noah is why we do what we do – why we spend so much energy raising awareness, traveling across the country raising money, and creating partnerships.
Mickie’s Miracles was born out of my experience with my daughter Mickie. She had her first seizure at three months old. By nine months old, she had failed over eight anti-seizure medications and was diagnosed with Intractable Epilepsy and Infantile Spasms (IS).
Each month that passed, she fell further and further behind her peers in her development. I knew deep down in my soul that something was gravely wrong. I wondered if we would ever get answers and often felt like we were fighting a ghost. Then we met Dr. Mary Zupanc, a Pediatric Epileptologist at CHOC Children’s Hospital of Orange County. Everything changed. We got the answers we had been seeking, even the ones we didn’t want to hear. You can see more of Mickie’s experience and her results here.
When Gladys reached out to us, we knew all too well what she and Noah were facing – and we had to help guide her and provide all the knowledge and emotional support we could. This is her experience in her words.
Gladys & Noah
Noah was born full term with no complications at birth. At about one month old I noticed he started to do some abnormal movements. My mother instinct told me it was not normal. We took him to our local ER and we were told he had a cold and the movements were normal baby behavior. The next day I couldn’t help but wonder.
I began to google baby stiffening of the body and jerking arms up above head and I came across some videos. We made an appointment with his pediatrician and he was seen right away. We were told the waiting list to see a neurologist could be up to a month or two. I decided to take him to Children’s Hospital Los Angeles (CHLA) worried that if they were seizures it could cause more harm to his developing brain. We were told there was no team to do an electroencephalography (EEG) and were sent home to continue to monitor him and asked to take him back within a week for a one-hour EEG. I was unaware that if he didn’t have a seizure in that hour, his EEG would be normal.
We were told to schedule an appointment with the neurologist in a month. I kept telling myself “Ok, they’re doctors. They know what they’re doing.” Confused and scared I went on my social media to look for more answers. I came across a wonderful page on Instagram called Mickie’s Miracles. I began to go through all their posts and I came across a post stating not to hesitate to call them. I called and left a voicemail. Right away I received a call from Caylin from Mickie’s Miracles and she was very helpful. We got in our car right away and headed on our two-hour drive to Children’s Hospital of Orange County. I knew my baby deserved the best. We got admitted right away and every concern we had was listened to by all the wonderful doctors and nurses.
While we were at CHOC, Mickie’s Miracles was so supportive the whole time checking in on us. Not only on Noah, but on me as his mother as well as my husband. They were also concerned with how we were doing. They came in, visited, and talked to us. They made us feel comfortable and like we could trust them. The neurology team at CHOC was so amazing and everything was explained so clearly. Once home Mickie’s Miracles kept in touch and continued to check on us. I was able to get a recording of Noah having one of his episodes and Caylin was able to help me with getting the video to the neurologist right away. With the encouragement from Mickie’s Miracles, I was able to advocate for my son and I will forever be grateful for the wonderful people helping to advocate for our children.
Noah was started on an anti-seizure medication and we have noticed an improvement in his development. We just received a diagnosis from Dr. Tran at CHOC – Epilepsy With Generalized Seizures. We will continue to advocate for our sweet baby boy with the thanks to Mickie’s Miracles. If it weren’t for Mickie’s Miracles or my mommy instinct, I would have ignored all the symptoms and not gone for a second opinion.
If anything in warrior baby Noah’s story spoke to you, let us know down in the comments! We LOVE to hear from our readers. Do you have a story to tell? Contact us!
Mickie’s Miracles is a non-profit foundation for the education and awareness of pediatric epilepsy. We run on the donations and support of others, so if you have some time, please consider donating to our cause. Thank you.