Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Conor- A Face of NF

My little guy’s name is Conor and he is 1 year-old and has been diagnosed with NF Type 1.  Conor’s dad also has NF1, but his two brothers have tested negative for NF.  At the moment, he has about a dozen café au lait spots and high blood pressure. Unfortunately, the diagnosis of NF came with glaucoma, which we didn’t realize was linked to NF until he was three weeks old and we saw a pediatric ophthalmologist.  Congenital glaucoma occurs in 1 in 300 NF1 patients.  At three weeks old, my beautiful little boy had an eye pressure of 37 and had surgery to lower the pressure and save his eye sight. This worked for some time until two days before his first birthday when the pressure in his eye sky rocketed into the 30’s again. There he was, my happy little boy , having surgery again and spending  his first birthday recovering from surgery, yet  he was still wearing his always never wavering smile. The surgery was three weeks ago and we had three weeks of good pressure. Today, we found out that yet again his eye pressure is at 37 and there is a very good chance that he will be having the third surgery of his short life next week. This is one of the strongest and happiest little faces of NF you will ever see, big eye and all.

– Stephanie (mom)



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