Hi, there. As many of you know, our son, Michael, has Neurofibromatosis (NF). He was born with it, as the result of a spontaneous mutation in his cells. Since he was diagnosed, at age five, he has dealt with some challenges--but he retains a healthy attitude and quirky sense of humor.

We are honored to have been chosen to participate in 4 NF Stories, a (friendly) competition that is designed to raise both awareness of and funds for NF research. In honor of this, we have written a poem (which you'll find after this message) that details some of the NF-related challenges that Michael has undergone. It is our hope that, through this poem, you may find a different way to view some of the challenges that people with NF have. Most importantly, we hope to raise funds for NF research, so that a cure for NF may someday be found.

We thank you so much for your support--every amount, large or small, really does make a difference in the lives of those affected by NF. Please forward this to anyone whom you think might want to donate and make sure you check-out the information available at www.nfnetwork.org and www.nfmidwest.org. Thanks again!


“The NF Game”

Some new parents know the nervous feeling
Of wondering if their baby will be well
Or if their genetics will be revealing
A disease that only time will tell.

Such was the case with our newborn son.
He was fine, though (no worries there),
Except for birthmarks (there were more than one),
Which were no big deal—we needn’t care.

But they were the first signs there
Of a disorder called Neurofibromatosis—
A genetic disorder that would tear
Our hearts upon hearing the diagnosis.

Flash forward twelve years
To the present day:
We’ve shed many tears
Along the NF way.

Through eye exams and MRIs,
All day appointments,
Pokes and prods that made him cry,
Good news and disappointments.

He was suspected of having
A tumor in his brain.
After taking the MRI, after waiting:
“No tumor.” It’s all part of the NF game.

Yes, it’s all part of the NF game:
The waiting, waiting, and still more waiting
For symptoms to develop (or to stay the same).
It’s just so unpredictable and frustrating!

Our son is one of the lucky ones,
For which we are thankful every day.
He can still live a life that’s fun
And learn to live with NF along the way.

Still, his mild case has a down side:
Scoliosis, orthotics, Lisch nodules are there.
Taking him to specialists on this NF ride
Has become a way of life, a burden to bear.

The scary part is never knowing
Where the NF game will lead us to;
The crying, the pain, the hurt is showing
Whenever we pray for God to get us through.

That’s the NF game that we play.
(There’s a reason for it, to be sure.)
We stay positive and faithful along the way
That prayers will be answered and they’ll find a cure.

Copyright  c   April 11, 2011, by Patricia Bukowski

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