Stories of NF: Mason D.

Mason first started to show symptoms of multiple cafe au lait spots at two months. We first thought they were his birth marks, but as the weeks went on, he would develop one every few weeks. At four months, he was evaluated by a dermatologist who diagnosed him with cafe au lait spots and referred us to the genetic clinic. After our evaluation, they recommended we complete genetic testing. In March 2020 we received the results that our son has NF1.

As parents you pray and hope child/ren are healthy for their entire life. When you come face to face with a doctor who tells you your child may have a genetic disorder, your world begins to spin. When you receive the diagnosis of NF, the hopes and dreams you had for your child begin to feel as they are slipping away. You almost grieve for your child and the life you have envisioned or hoped for them. Once we received education, were given resources to research NF, and connected with CTF, our fears slowly began to diminish. We were able to connect with other families in the area with NF who shared their stories. Not a single family would choose to be part of a community for a health concern, but we are so thankful to be part of this community. We have a lifetime ahead of us, with an unknown journey, but we feel our support system is strong and the ongoing research to End NF gives us hope.

Now 22 months, Mason loves everything trucks, tractors, cars and dirt! He loves to dance, laugh, play with his 2 sisters and run!

Our family stays motivated in the fight to End NF by reading others stories, reading the advances in research and medication. We continue to participate in the Shine a Light NF Walks (hoping they will be in person again soon) and following ctf.org. We say our team is “Mighty Mason.” We help raise donations for further research, encourage our support system to light up in blue and green, and wear our NF gear to raise awareness!