Shortly after my son, Jonathan, was born, I noticed a couple of birthmarks around his body (under his armpit, on his wrist, and his inner thigh) As a first-time parent,  I didn't think much of it, just thought my son was born with cute birth marks. It was not until his two-month checkup that we noticed he had several more birthmarks and some freckles around the groin area. That is when the doctor informed that these birthmarks were actually cafe-au-lait spots. She thought my son may have Neurofibromatosis, which was the first time I ever heard of that word. The next step for Jonathan was to see a genetics doctor, to be able to get an official diagnosis. We realized that NF was not passed down through family. The only signs of NF were the cafe-au-lait spots on Jonathan. Within a couple of weeks, Jonathan, his grandmother, and I were sitting in the office of the geneticist at Children's Hospital. We patiently waited for the results to come in. Once Jonathan turned six months old, I received a phone call confirming that Jonathan indeed has Neurofibromatosis Type 1. 

 

I was unsure of a lot of things and did not know what the next steps for Jonathan were going to be. That is when he was referred to Dr. Klesse and her team at Children's Hospital of Dallas. I was so nervous at his first appointment and did not know what to expect, but Dr. Klesse welcomed us with open arms and answered every question we had. Dr. Klesse informed me Jonathan would need to be seen every six months until he was three years old, and we were to inform her of any changes we may notice during that time.

 

Jonathan is now seven years old and throughout the years has received a swallow test, several MRIs, a spinal tap, EEG, and therapy services. Currently, Jonathan receives routine MRIs to watch over a plexiform neurofibroma along the left side of the abdomen, routine eye checkup, and several therapy services. He works with his speech, physical, and occupational therapists to help him face his everyday challenges. Jonathan was also diagnosed with ADHD this past year and works with his psychologist and behavioral counselor to help him through his emotions, anxiety, and the feeling of being overwhelmed. He is now in second grade at Golden Rule and is doing great with the help of the staff, and special accommodations to help him focus with all his extra energy. 

 

Jonathan is smart, full of energy, has a great imagination, and is always full of questions. He loves to build with his Legos, train set, and puzzles. He enjoys watching Godzilla movies with his grandma, and of course playing Roblox. Jonathan is also known for his hugs, so when the day comes that you meet him, be prepared with open arms. He plans to become a police officer, but also wants to start his own YouTube channel. He says being this year’s Jr. Chef will help him gain followers for when he starts his channel! Every year during National NF Awareness Day, Jonathan shares his NF story along with cupcakes for everyone.

 

We are thankful for all the family and friends who support Jonathan through his NF journey. We are also thankful for everyone who supports NF research. But most importantly we thank God for giving us the strength, medical staff, teachers, and family who have helped us along the way.