Stories of NF: Kayden H.

My son was diagnosed with NF1 in November 2016. He first showed symptoms of cafe au lait spots when he was 6 months old. When he went in for his checkup, they notice a plexiform neurofibroma on his face. We went through three MRIs for his head, brain, and eyes and it confirmed the plexiform on his face, as well as two small tumors in his eyes. He has an oversized head, is very small and short, and has been behind on some of his developmental milestones.

Now 2 years old, he sees a neurologist, ENT, GI doctor, ophthalmologist, speech therapist, occupational therapist, and an oncologist for chemo treatments. He’s the strongest little boy we know.

NF1 will cause my son to have development therapy, speech therapy, occupational therapy. His doctor wants 1-2 MRIs a year to check on his tumors as well as 6 month checkups every year. He’s only 19 months old and will have a long road ahead of him. Our plan is to do whatever we need to do for him to have a normal life and encourage him that he can do anything he dreams of. He has a very supportive and loving family.

Kayden loves his toy cars. His favorite movie is Cars and Toy Story. He blows kisses and says Hi to everyone that passes by him and every time they say hi back, he flashes the biggest smile ever. He is so full of life and love.

We are motivated to stay strong for our son and show him that our motto we have come up with for him is “It is not bigger than him, he is stronger than it.” And we will do whatever he needs to grow up happy and healthy. He has the best personality and we want to get him involved in as many activities as we can that are associated with NF1 so that he can see he is not alone.

– Amanda, Kayden’s Mom