Stories of NF: Liam S.

Liam first showing signs of neurofibromatosis at 4 months old when multiple café au lait spots started showing up. Not knowing what it was, his pediatrician sent us to a neurologist; all tests came back normal, and we were told he was a boy with spots.

Early on Liam showed signs of Autism, and when our new pediatrician finally listened to me, they sent us directly to a new neurologist and she stated that, with the number of CALs he displayed and the fact that he was nonverbal Autistic, she believed he did indeed have NF. She sent us for a follow-up MRI of orbit brain and spine, and Liam presented with bilateral optic pathway gliomas. She then sent us to the Arnold Palmer Oncology unit where we attended his first NF clinic meeting and met with the genetic team, as well as other specialists. Liam’s genetic testing came back positive with the NF mutation and confirmed he had NF1.

Liam had to start weekly chemotherapy for his optic tumors, because they began growing rapidly, and it’s been a struggle. Having Autism, we have to look at things differently in how to treat Liam and what he can tolerate. We have had MRIs every 3 months since he was diagnosed in July of 2017. He has also had eye exams with an ophthalmologist every 3 months to monitor his tumors. He attends full-time ABA therapy as well as speech, physical and occupational therapies weekly. Not to include his multiple specialists monthly; NF isn’t easy for him

This is all why we share our story on Liam’s Legacy on Facebook, we try to advocate and educate about NF and Autism and now our chemo journey. We share facts and our everyday lives. We attend walks and fundraise to help with research.

Liam loves all things Mickey Mouse. He is a kid sweet and loving soul and his giggle is contagious and lights up the room. He loves going to Walt Disney World in Orlando on the weekends and working hard on the weekdays with therapy and chemo. He is truly the definition of a fighter.

-Submitted by Liam’s mom Kelly