Stories of NF: Alex S.

Mar 21, 2018, Posted in NF Hero, NF1
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Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.

As you can imagine, the first year after we found out was full of unpleasant news and a lot of research. We tried to understand this condition that we had never heard of before. We found information that was confusing and scary. We didn't know what to say, think or ask. Suddenly, our life became a rollercoaster and the journey of constant check-ups for eyes, ears and MRIs started. I was looking for information every single day trying to learn about the disorder and trying to find families that were dealing with the same conditions that we were back then. I needed to understand and share what I was feeling, but also needed for someone to share with me how it was to live with NF. After almost 6 years of looking for help and support I found out about the Children's Tumor Foundation and started a connection that has changed the way I feel and the way I see this condition.

At the beginning, it was very difficult to accept reality, but as a family we realized that we only had two options: To live our life with Alex in fear of tomorrow or to make the most out of everyday and help Alex become the best he can be. The journey has not been easy, but we as a family work hard and support him in every plan he has.

Alex is a 13-year-old middle schooler who loves to read, ride horses and spend time with his family. He has a heart as big as life, loves his family and is always thinking of ways to help others. He has his challenges and is learning to deal with them everyday. He has great plans for the future and we will keep supporting him and reminding him that NF does not define him.

- Alex’s mom, Mariana

 

 

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