Tags » Neurofibromatosis


OK, so my daughter’s marks are not from neurofibromatosis.
They’re from lemons.

It appears that her skin was exposed to lemon juice before going out into the sun, and it caused chemical burns all over her face and legs. 319 more words



The best piece of advice I’ve received from other parents is to leave well enough alone. If your baby is quiet, don’t give her a toy. 803 more words


Anticipation leads to frustration!

I was looking forward to today for over a week now!  The stitches were coming out of my foot!  Finally, I’d be able to walk flat-footed again.  475 more words

They can't just "get over it"

My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. 721 more words

Being Idle

I have never been one to be idle. I can’t sit still. I have never been able to. “You have ants in your pants” my mom would tell me. 816 more words

If Today is a Good Day...

By: Dawn Thompson

A doctor once told me, “If today is a good day, then, it’s a GOOD day!”

At the time, my four-year-old was hospitalized for acute ataxia of unknown origin. 549 more words

Floating Hospital For Children

Motorcycle Ride for Neurofibromatosis

My daughter and I rode in a charity ride supporting Neurofibromatosis (NF).  The ride was hosted by NFmidatlantic.org and the Baltimore Ramblers Motorcycle Club.

NF is the most common of the “rare” diseases.  241 more words