Noah was born a healthy 8lb, 3oz baby boy on May 19, 2001. He was our second born son and we as parents couldn’t have been more overjoyed. Noah went on to love the movie ”Cars” and “Lion King” and to play wrestling with his best friend and brother Isaac. According to Noah, Isaac could have hung the moon and Isaac loved to protect his little brother. We felt that we had a perfect little family.
We had just returned from a family trip and Noah started his first day of kindergarten. At age 5 and one month into the school year, Noah had his first of many massive strokes. At this point I was four months pregnant with my third child. Noah was up all night vomiting and but yet, apologizing for keeping me up. He was always so protective of me. The next day I woke up in bed with him standing right beside me. He called out “ Mommy, where are you?”, I froze. “Noah, I’m right here”, I said. His eyes never met mine. He looked up, around, to the side while he called out to me. I screamed while grabbing my stomach. I tried to remember Victor’s number. “God help me!”, I cried. I yelled into the phone, “Noah’s blind!”, as I gasped for air, I couldn’t breathe.
A short while later, we arrived at our local hospital and there was Victor already waiting for us. Though only about 30mins had passed, he had beaten us there, even though he had been in Boston when I called. Doctors intubated Noah and he was off to Boston Children’s Hospital with Victor via helicopter while I followed by car with family. After a batter of tests and a lengthy stay in the ICU, he was diagnosed with Melas, one of the most severe forms of Mitochondrial disease. “What is that?” I asked, “Are you sure it’s not epilepsy?”. They were certain on their diagnosis and knew what Noah had. They had performed a biopsy on his muscles. My world just seemed to stop. I read everything I could on the disease, I grieved, I cried, I screamed, I blamed myself, and here I was with another child on the way, a baby girl. I felt so guilty.
Shortly after his diagnosis, Noah started a school that was better equipped for his new needs, The Schwartz Center for Children. He loved it there. He had friends just like him, and he wasn’t looked at differently. But try as he might, Noah was regressing. He was having mini strokes followed by seizure clusters more and more frequently. He started with left side weakness, which led to forgetting everything that he had learned in school; his alphabet, colors and how to spell his name. Everything gone! He even forgot that I was mommy. Doctors explained to me that this was juvenile dementia. This was happening faster than our minds could comprehend. While other children were having positive strides, Noah was doing the opposite. From there he went on to stop eating so we had to have a GI tubes placed in. Noah then began having issues with his basic motor skills. He stopped walking, so we got him a walker then when followed by a wheel chair. Then at age 11 and on the 4th of July that year, Noah had a huge setback and experienced a massive stroke that took away his ability to smile, speak and move. The day before would be the last time that I would ever hear my little boy call me mommy, smile his crooked little smile or yell out, “Go Lightning Cachowow!”
Our lives were completely turned upside down. I became depressed, grieving for the little boy that was no longer, while controlling my feelings in public for the sake of other children. We as a family had to educate ourselves in Noah’s new life. Our lives were filled with many new things like, tube feeding, medications, changings, Physical therapy, full-time nurses, PCA’s, specialists to see in Boston. Our lives were completely changed and no longer what they were. We went from being very private people to having an open door policy. There was always a person going in and out of our home. Of course, we have come to love them all now, but in the beginning I was resentful and asked, “Why us? Why? Why? Why?” Then came the answer from above, “Why not?”
We were just like other special needs parents. They’ve asked the same questions that we had. They’ve cried their anguished tears. They all had also wondered, “Why?” Our eyes were then opened to something that we would never have noticed if not for the gift that God had given us by the name of Noah. There were families in our community with the same struggles of coping with medically fragile children and on top of that they were also struggling to give their special kids accommodations that insurances wouldn’t supply. We were lucky that we had the means and could give Noah everything that he required.
In Volunteering for other fundraising events, I envisioned having our own foundation in Noah’s honor. We believed and wanted to have a foundation that would provide aid to families in which 100% of the proceeds would go directly to the sponsored families in need. From this idea, we started the Team Noah Foundation to help local families with their needs and the needs of their special children.
– Christine Fernandes