Stories of NF: Chandler H.

My son was first diagnosed with NF1 when he was two years old (he’s now 12). He had a seizure and that’s what led to him having an MRI and finding spots on his brain. He had shown signs previously with the café-au-lait spots, but his pediatrician at the time was not familiar with NF and did not recognize that was a symptom.

My son has multiple specialists he sees throughout the year. Four of the specialists he sees every three months; we have to travel an hour and a half to get to the clinic.

Chandler has been through multiple surgeries: shunt placement (obstructive hydrocephalus), port placements and removals (for chemo), contracture of tendon sheath for both legs, rods/plates placed in right leg due to unequal leg length, and several brain surgeries targeting the tumors. He’s had to endure chemotherapy treatments four times. He is developmentally delayed, but he does not let that stop him. He loves music, crafts, and singing karaoke.

Chandler is very outgoing and loves to share his story with anyone that will listen. He is very adamant about raising money to find a cure for NF. He stays positive believing CTF will find a cure in his life time.

-Chandler’s mom, Courtney