In May, for the ‘Make NF Visible’ NF Awareness Month photo contest, NF Mom Andrea submitted a beautiful story about her son Matthew and his physical therapist Amber who also lives with NF1.
Amber is Matthew’s physical therapist; they both have NF 1. Many people we encounter have never heard of neurofibromatosis; it was a surprise to all of us when Matthew’s therapy clinic told us one of their staff was diagnosed with NF1 as well. Matthew struggles with pain and completing daily physical task, who better to work with him then someone with NF. Even though Amber and Matthew are both living with NF 1, it affects them differently. Matthew’s NF case is much severe, while Ambers has been mild. Matthew’s NF was spontaneous, Amber’s was genetic. During Amber’s youth there wasn’t many resources or research regarding NF. Now for Matthew we have seen great accomplishments in NF research and approval for NF treatment. Even though their NF journeys have been different, having Amber in Matthew’s life has been a blessing. Amber has been a great resource and beacon of hope for Matthew’s future. Matthew too can grow up like Amber, have a family, career, and accomplish all his goals. They make NF visible by working together to become stronger.
Amber Keller, Physical Therapist/ Mom
“I try to make NF visible by advocating for funding NF research. Since I have NF and I have 5 family members with NF, I have seen how it manifests differently in each one of us. As a therapist, I want my kiddos to see even if you are diagnosed with something, you can still achieve your dreams even if that means you have to work a little harder to get there. I try to be a good resource in regards to NF to other therapist and families dealing with the diagnosis in my clinic as I lived through it and I have patients living with NF as well.”
Matthew Romero, Student/Military Child
Matthew makes NF visible by embracing NF and being himself. He is self-confident, proud of his freckles and bumps and shows them off. He is brave through all his medical procedures and educates others about why his skin is different. He does his best every day, he shows kindness to everyone around him. He makes goals and works very hard to accomplish them.
