Conley was only two months old when we first noticed a heart-shaped “birthmark” on his leg. We thought it was strange that a birthmark would just appear rather than be present at birth, and it resembled what we knew to be a café-au-lait spot. We Googled “café-au-lait spots” to get information on what can cause them to appear, and we were overwhelmed and terrified by the amount of information pointing to the spots as an indicator for Neurofibromatosis, as well as other neurological disorders. Our hearts were heavy as we contemplated what this meant for our sweet baby boy. Fast forward to his 1-year check-up and the one spot had now become many, with some being very large, along with axillary freckling – another indicator of NF. Rather than “wait and see” for other indicators to appear, we found a geneticist at Cook Children’s, who after looking at Conley, promptly told us that she is 99.9% confident in diagnosing him with NF1, without any other physical indicators. A follow-up MRI confirmed what we already knew in our hearts. Conley was 18 months old at the time of his official diagnosis.
The weeks and months after the diagnosis were spent gathering information and finding out as much as we could about NF and what Conley’s life could potentially look like. We attended our first NF Symposium in Houston not long after the official diagnosis, which was again terrifying, since we caught a glimpse of just how NF can physically take it’s toll on those afflicted. Conley is now 10 years old. Through the years he’s had many MRIs, neuro-ophthalmologist visits, and physical therapy sessions. He has an optic glioma that appears to be stable, as well as a plexiform on the inside of his arm. We count our blessings every day that Conley is only mildly affected at this time, knowing that anything can change at any time; nothing is guaranteed with NF.
Conley is kind and compassionate, always willing to share and to help others. He is also a passionate foodie at heart, so being the Jr. Chef this year is right up his alley! Conley has no qualms sharing his NF story and we hope that he encourages others to become advocates and champions for all NF families as scientists continue to work towards a cure!