Jesse's Poem : A boy that has NF like our baby Koda

By Jill Markland

Jesse Markland is active, sweet, and smart
His eyes are deep brown
They melt your heart

Playful and mischievous is definitely his style
He gets out of trouble
With his beautiful smile

As he turned two I could take it no more
At a touch of his head
In pain, he'd drop to the floor

It wasn't mistaken and it wasn't mild
It was unexplainable misery
To much for my child

From one to ten in measuring the pain
He was a forty-five
Like he'd been hit by a train

We needed to know, what could it be
We learned and were horrified
He'd never be free

No treatment No cure are the words that burn
Our faith in our God
Is where we would turn

Jesse has been diagnosed with a horrible disease
We watched him sleep quietly
As we wept, No, dear God, please

Nerves of his head and skin cause the pain
He has tumors all over his body
And one in his brain

He has five separate doctors to see
He knows tests, needles, and drugs
He's only just turned three

What he has is NF1
I've mentioned his challenges now
There could still be more to come

NF1 is progressive and unknown
We won't see more coming
Even when he's grown

We've been sad but we have to be strong
To let this beat us
Would be so wrong

It's been a heartbreaking journey for a
husband and a wife
He is our baby
And we're fighting for his life

We raise funds for the research to find the cure
We won't just sit and take it
And that is for sure

Each night is the same that I pray
A treatment will be found
There will come a day