Stories of NF: Josh and Verity C.

Our lives changed forever in May 2019. Our 3rd child, a beautiful girl who we named Verity Kate, had just arrived that March. We were at her 2-month checkup. The doctor looked at us and very calmly said, “I don’t want to alarm you. But have you noticed these spots on Verity?” She pointed out three light brown patches of skin that I had never noticed before. They were barely visible. The doctor then told us that having a couple is no cause for alarm, but we should keep an eye on her and call her if she developed anymore. She explained that these spots are often an indicator of a disorder that we had never heard of before: neurofibromatosis. She told us not to Google it. Of course, that was the first thing that we did when we got home.

As I was pouring over the websites reading about this genetic disorder, it hit me: My husband Josh has it too. Although Josh has over a dozen of these cafe au lait spots, we always assumed that they were simply birthmarks. We had noticed the lumps under his skin before. To be honest, they were something that I was very concerned about. But I had sent him to two primary care physicians and a dermatologist in the past. They had all looked him over and said that the dozens of lumps under his skin were lipomas, and that they were nothing to be concerned about. We believed them.

The time spent between May and November was a whirlwind of doctor appointments, blood tests, phone calls, anxiety, and waiting. We finally got the call from the neurologist in November. Verity’s blood test had come back positive for NF1.

This diagnosis has not only impacted Josh and Verity, but our family as a whole. Things will be different. And different will become our new normal. There will always be an element of anxiety. I will always be afraid that a scan will reveal my worst nightmare. I will also worry about Verity, and how she views herself. I am worried that other children may tease her for being different… that she may believe their lies. I want her to know that she is beautiful and strong. That her diagnosis does not define or limit her. That God has a plan and a purpose for her life, and that when she feels weak, her mama will be strong for her.

This diagnosis has brought us closer as a family. When my husband got the results back from his MRIs, we began to accept the fact that he would be getting a diagnosis soon. His scans revealed a lesion on his brain and enlarged nerves on his cervical spine consistent with NF. Those scans were a reality check for us as a married couple. Suddenly, it didn’t seem worth it to be upset by little things. We appreciate each moment that we have together. We understand that we need to be strong for Verity. And I need to be strong for Josh. We are all in this together. This diagnosis showed us that our bond as a family is unshakable. We will all fight for each other.

-Allison, Josh’s wife and Verity’s mom