Updated: May 18, 2021
"She has no prejudice she loves unconditionally, she laughs, she dances and makes us dance."
Meet the St. Denis family with their sweet Moya Marie, the heartbeat of their home! Moya's mom Jaime, is a dear friend of mine, who ironically lives only houses away. Only God knew that His perfect planning, HE would provide a friend who "gets it" only houses away from one another. Her daughter Moya, has something so rare, Jaime does not know one other person with this diagnosis.
Please read in Jaime's words their beautiful and heart wrenching story of sweet Moya:
The story of our beautiful Moya Marie.
Moya was born in Sioux Falls South Dakota, February of 2007. I was working as a nurse in a perinatologist office. I had the best prenatal care and most high tech ultrasounds possible. There was nothing but a small echogenic focus demonstrated on our ultrasounds. After our first daughter Sarena was born, we had two miscarriages and Moya was the result of many months of infertility treatments. However, my pregnancy was uneventful and all we knew she was a healthy baby!
After an uneventful delivery, Moya was born and was perfect. Two weeks later, she stopped breathing while I was breastfeeding. I performed CPR and we rushed her to the hospital. After a few days in ICU, it was determined that she had sleep apnea and was sent home on an apnea monitor. Shortly thereafter, she developed gastric reflux. As months went by, her reflux became increasingly worse despite all the medications. At six months of age, she started to drop off the development charts which the doctor and I attributed her lack of movement due to the loud alarms that would constantly go off with her vomiting. It wasn't until she was closer to 9 months of age that I discovered there was something wrong.
I had a patient enter my office with a little boy Moya's age and he was all over the place. My
stomach dropped.... how had I missed this? Moya wasn't moving, she wasn't rolling over, she wasn't sitting up, she wasn't reaching and grabbing at everything. What was wrong with my perfect baby?
Our journey began… first with the pediatrician confirming my worst fear, there was something wrong with my perfect baby. We went on to see a neurologist both at Sanford Heath and then at the Mayo Clinic in Rochester. Moya was diagnosed with Cerebral palsy, microcephaly, and failure to thrive. In the next 48 hours, our world was turned upside down. Between X-rays pointing out all the "abnormal" areas in Moya's brain, to being told she needed surgery for a feeding tube.
Over the next six months we underwent her extensive surgery and hospitalization.
We were in the thick of how to do feedings and care for Moya's new mini feeding tube. Non-stop doctors appointments, therapy appointments and learning how to navigate state help and paperwork left us emotionally exhausted and actively grieving. Crying when the nurses made me fill out developmental paperwork. Soren and I came to the conclusion that we needed help.
We moved back to Washington state to live with my parents and have them help us with the implementing all the tasks the therapist asked us to do. Over the next few years I was on a crusade… determined that Moya would be ok. That she would walk if I just worked hard enough. We did OT, PT, speech, electrode therapy, swim therapy, horseback riding therapy. Followed up with the best doctors in Seattle, we heard about stem cell therapy and the amazing results some people were seeing. The only place this was done at the time was in Germany. With the help of my co-workers at the hospital, we raised 20,000 dollars. When Moya was four, we flew to Germany and Moya underwent her stem cell transplant. Prior to the transplant, Moya was not able to walk even with all the bells and whistles of her walker. Within six months she was walking with stand by assist. It was truly a miracle. But now, I wanted her to talk. Developmentally that is how it works. I had great hope.
We had spent three years living with my parents, and in that time we had our twin boys, Wyatt and Hudson. It was time for our family to find our own place. My husband went on a job interview and got the call that they would really like him for a Regional position in Minnesota. Once again our world was turned around. Little did we know that this move would save Moya's life.
Moving to Minnesota, we re-established Moya’s medical care with the doctors at Mayo Clinic. This is when we met Dr. Kotogal a pediatric neurologist and sleep study expert. Moya's sleep apnea was becoming progressingly worse. She was having prolonged periods of apnea and desating into the 80’s multiple times per hour. We started her on medications to stimulate her brain to make her breath as well as surgery to removed her adenoids and tonsils.
After establishing care with every doctor you can imagine, we were once again in Dr. Kotogal's office. He looked at me and said words that once again rocked my world “I don't think Moya has Cerebral Palsy"…. WHAT!! No one, not one person, in the laundry list of doctors, specialists, therapist, had ever suggested or even hinted they thought this. He wanted to do additional invasive testing that required sedation and the O.R. It was there that it was discovered, Moya had almost zero folinic acid in her cerebral spinal fluid. She couldn't convert folic acid into folinic acid and her brain was starving to death. If we had not discovered this, she would have gone deaf then blind and would have died. We started the simple treatment of giving her Folinic Acid.
Within a month she was walking without her walker, and her receptive language had improved tenfold. A miricle.…. a miracle at the age of five. If only we had known when she was little, she would have been “normal"… so this new diagnosis was both a blessing and a curse. To have this diagnosis was crucial for her, but to know what could have been is beyond heart breaking.
During all of this she had started having ‘behaviors’ biting her arms, screaming, rocking, and was diagnosed with Autism. She also underwent full Genome Sequencing and has found to have two genetic abnormalities that are very rare and not much is known about. She had also developed absence seizures upwards of 30 an hour, extremely low iron levels requiring IV iron, potassium surges requiring follow up by cardiology… the list is endless.
Moya's list of medical diagnosis can be overwhelming. She is still working on milestones, and is not yet speaking, but can work an iPad like no other and is working on her communication device with improvements that can be measured! The level of care she needs is staggering. It's easy to get lost and be bogged down by the hardship.
However, the joy she brings to our family is like no other. She has no prejudice, she loves unconditionally, she laughs, she dances, and makes us dance. A nurse once told my oldest daughter, Sarena, that Moya was lucky to have her, but the truth is we are the lucky ones to have Moya.
Because of Moya's condition, it alarmed doctors with my last pregnancy, which showed her sister Jazzy's head circumference was starting to decline in utero. Moya's baby sister, Jasmine (Jazzy), was delivered early and was started on the folinic acid to prevent her brain from doing the same thing as her sister's. Jasmine is excelling in school, playing soccer, and has zero problems