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Cookies with Santa Logo
December 1, 2018
2-4 p.m.
Presented by the Texas NF Foundation

2017 Host Family: The Davis Family

Ryan is our first born, our son, a special boy, in fact the only boy on both sides of our family. He is a big brother and our hero. Ryan’s story begins shortly after birth when we noticed café au lait spots. Several months later we became concerned when one of his legs began looking different. When we asked the doctors, they brushed it off and said he was fine. As his mommy, I knew something wasn’t right.

Shortly before Ryan’s first birthday, finally an urgent care doctor was concerned that Ryan’s right leg was much larger both in length and width and it appeared to be a darker color. He scheduled an appointment with a Geneticist; who would diagnose Ryan with Neurofibromatosis or NF type 1. I remember the doctor telling us not to google Neurofibromatosis because the worst cases would be highlighted. We left the doctor’s office with our hearts broken and our stomach in knots; knowing that something was wrong with our baby boy, we sat in the car thinking what is NF? How did he get it? What does this mean and where do we go from here?

At three years old, Ryan underwent the first of many surgeries to correct his bone deformities from the tumor in his right leg. This should have been such a happy time for us…we had just had our second child, Kaylee Reese. Just one month after Kaylee’s birth, Ryan was having surgery and wouldn’t walk for a month. It was heart wrenching watching our active three year old unable to do the things he loved…running, playing with his toys, going to school with friends and helping with his new baby sister.

Just four short months after his surgery, a routine MRI revealed that Ryan’s optic glioma had grown significantly. If it continued to grow, Ryan could go blind. One of the options was to start chemotherapy to stop the growth. Our hearts sank and the tears began to flow. Ryan looked at me as I was crying, not knowing what all this meant, and gave me a hug and said “it’s ok Mommy”. There was our sweet boy always worrying about others more than himself. The doctor decided to wait on the chemo and ordered another MRI two months later. Those next two months were the worst…worrying every single minute and praying for God to stop the growth. Our prayers were answered and for the last year his tumor has stabilized.

In October, Ryan had his second surgery on his leg. We know he has many surgeries ahead of him on this journey. He meets with his ophthalmologist every six months and his orthopedic surgeon and oncologist every three months. He is closely monitored by a team of physicians to ensure that his tumors are stable and to watch for additional tumors. With all the doctor’s appointments, tests, and surgeries you would think he would hate going, but he is always excited to see his wonderful doctors and nurses.

As we continue to take each day as it comes, and make our way through this journey, we have met some of the most amazing and supportive people throughout the NF community. Ryan has made lifelong friends who face some of the same challenges and each of these people have nothing but a smile on their face and positive words of wisdom to share. They have become our Family!
We like to refer to this NF journey as a rollercoaster because you never knew what lurks ahead. Despite all the twists and turns, Ryan continues to live each and every day to the fullest. He has a heart of gold and makes the world a brighter place!

The Davis Family