The beginning of 2024 came, and Taylor was an active two-year-old trying her best to keep up with her three older sisters all the while trying to show the world she was the boss, which in some cases, she was! Then out of nowhere, she developed what we now know is called Opsoclonus-Myoclonus-Ataxia syndrome which is a rare neurological disorder affecting only one in 5 million children each year.
The first noticeable symptoms were small tremors in her hands and within days it rapidly progressed to the point where she could not stand or walk. As you can imagine, this was very scary for us, and we immediately brought Taylor to the emergency room. After being seen at the local emergency room in our town, we were immediately transferred to Phoenix Children’s Hospital (PCH) where this nightmare was just beginning. Our baby Taylor endured the first four days at PCH going through every type of procedure, blood draw, and imaging you could think of just looking for a diagnosis and reason for her symptoms. All the while, she was still deteriorating.
The doctors first informed us the ataxia (loss of muscle control) was caused by a viral infection from an illness weeks prior. That unfortunately was not the case and the next day the neurosurgeons entered the scene and told us that Taylor actually had a cyst on her spine causing the loss of muscle control. Unfortunately, yet again, this was not the case as the next day we were met by the general surgeons and oncology doctors who gave us news that no parent should ever have to hear, “We found a tumor.” A cancerous tumor was found attached near Taylor’s spine and wrapped around her descending aorta. What followed was a miraculous surgery by very talented surgeons who were able to remove the cancerous tumor. After weeks of being in a hospital, Taylor was allowed to leave all the while knowing that she had a long road ahead of her.
We wanted the absolute best and were going to stop at nothing to get that for her. Since her syndrome is so rare, we wanted to get second opinions on how to best treat her, and that is where Angel Flight West comes in. From the first phone call to our last flight, they have been the most wonderful people to deal with.
In particular, we’d like to thank pilot Dennis for all that he has done for us. He has bent over backwards to do everything in his power to assist in our journey of finding the best treatment for our daughter. Not only has Dennis picked up multiple flights, but he was also so kind to drive us from the airport to our hotel during Los Angeles rush hour traffic which added many hours to his trip. Dennis is genuinely one of the nicest persons we have ever met, and we’re convinced that if we needed something from him tomorrow, he would find a way to make it happen. Taylor loves seeing and flying with Dennis and asks about him often. The rides are smooth and comfortable, and his hospitality is second to none.
Although we are blessed that Taylor’s cancer has yet to return, we are still trying to navigate the treatment for her rare syndrome which has been very difficult. This journey has been long, the struggles have been deep, and our faith has been tested like never before, but we believe that God does all things for the good as His plan for Taylor is perfect. Having this great organization and volunteer pilots who are there in our corner to help any way they can has made it easier and brought us comfort knowing that we are able to easily travel to other states to receive the best treatment possible.
