NF Stories

Do you live with NF? Do you know someone with NF?

Building on last year’s excellent initiative led by NF Inc. California, the NFCA is proud to introduce NF Stories, your own Story Page on the NFCA Website linking us together with your own words, your own photos and pictures, your own stories. It’s easy! You just send an email with your story, or poem, or photo, and consent form to the NFCA staffwriters at We do the rest. Please help the NFCA to encourage others by sharing your NF Stories of encouragement!

Poem for The Poor

by Jasmyne Kelley 12 years old, far right

When you’re down and sad, I’ll tell you a joke that’s funnyKelleyFamily
I’ll give you a tissue when your nose is red and runny
I know you may not be wealthy, but still I know your kind
And I will help you anyway I can think of in my mind
You sit there through the night, with your face full of fright
The stars are a beautiful sight and the only form of light
Don’t sit there begging for money
Be a street comedian if you’re funny
But most important don’t be desperate and blue,
the world still has a place for you

Jazz entered a world wide student contest for an opportunity to be published in the Anthology of Poetry by Young Americans 2006 Edition. This poem was published on page 9. Great and compassionate work, Jazz. Congratulations!

My Daughter Jazz’s NF

Richard Williams

Many people in the world never heard of Neurofibromatosis
Today and forever you will have some knowledge of it

Vital information is always helpful and I aim to please
There’s another name for it called von Recklinghausen disease

Other chronic illness we focus on gets very hectic
Jazz’s condition slips through the crack, it’s also genetic

We are dealing with keeping stress out and finding time for humor
It’s always serious worrying about the growth of a tumor

When this happens it jeopardize the nerve cells
But before it can I pray to God he never fails

She don’t like MRI’s or seeing a neurosurgeon but she does her part
A sign of Nf is spots on her body looking like birthmarks

My diabetes along with her situation, one thing is very true
There are two diagnosed types NF1 and NF2

We go through life saying “Hope it never happens to me”
The affect of 1 out of 3,000 is substantial emotionally

It’s close to my heart and now I’ll speak
Her circumstance is right there under the cheek

I will do my best being an advocate that’s for sure
They’re doing research but for NF there’s no cure

Now reality has sat in, this is a unwanted ordeal
If you’re not going through this don’t say “I understand how you feel”

God has always blessed us he hasn’t missed
As a matter of fact we went to Disneyland thanks to Make A Wish