The Children's Tumor Foundation

01/24/2024 | Press release | Distributed by Public on 01/24/2024 09:16

Stories of NF: Jaxson & Sara

My son Jaxson was diagnosed (NF1) few months after birth. After his diagnosis I was also diagnosed, at age 27. I was so scared, especially for my son. I had so much anxiety and felt so guilty because I gave him NF. Getting pregnant with my second was a huge surprise, she was born in 2022 and unfortunately she shows signs of NF as well. My kids are my everything, they are happy and bring me so much joy and love.

I never knew I had NF, and I have been lucky. I have a normal life, have a master degree and great job. Jaxson goes to preschool and NF doesn't seem to affect him. He is very smart, happy, and the sweetest boy ever. Sara is only four months old and she is a happy little girl. They make me so happy, but I'm scared about their future. There is a lot of guilt and what-ifs.

(Their defining moment) was probably the diagnosis. It was so scary, but I have a great support team, and an amazing doctor that follows my kids.

Jaxson loves playing, jumping and dancing. He enjoys baking and eating whatever he bakes! He loves his dogs and he is always happy and full of energy. Sara is only four months old but she always smiles. She loves her brother! I work full time as a healthcare administrator and got a master degree in health systems management last year. My family (kids, hubby, and two dogs) make me happy. If they are healthy and happy, I'm happy!

Favorite Song
What I Never Knew I Always Wanted by Carrie Underwood

Dream Superpower
Time travel

Favorite Food
Pasta, pizza

Story submitted by Grazia, Jaxson and Sara's mom, who also lives with NF.