Here is my poem dedicated to Elliot Adler:

Unwrap Me
by Stefanie Dell’Aringa

Scout’s honor, this is my life:
I feel like an Egyptian mummy
being wrapped in slow motion from the feet up
My insides are like pottery breaking
As the python cloth squeezes
Unwrap me, please, and let me be a boy again
Because my ankles are tired
And I don’t like the word “prosthetic”
If Star Wars was real, I’d light saber myself
Out of this mess
Hurry, and find me a cure
Until then, I’ll go outside
I’ll blow hot, angry air into my trumpet
I’ll eat cake. Sweet!
I’ll decide I can wait
And then I’ll go to bed and dream
Of a ladder made of Legos
That reaches straight to heaven
and it doesn’t hurt to climb it

Living with CMT is like walking on quicksand – no matter how softly you step, you slowly sink footprint-by-footprint until your footprints are all that is left of your sole.

Life may be hard for some, others will be fine and others will be clouded.
No matter what happens you can only look forward.
For only looking forward can you see your future and only in the past can you see the past.
If you only look forward you can see the future of what may be, but in their past is clouded by the bad times of your life.
Never look back if there is a future.

Loss of nerves,
Gain in strength.
Inherited from mom and dad,
Loved by mom and dad.
Weakness makes you stronger.
“Family Disease”,
Family bond.
Charcot, Marie, Tooth,
Nothing to do with teeth.
We can beat CMT.
Looking for a cure,
Sometimes the best cure is love.
Loss of sensation in hands,
Gain in sensation of heart.

Determination is Key
By: Ellen Pratt

Way to be a Soldier
Fighting harder than most.
Many give up
While you have kept on going.
The bravery is heartening
And it will inspire others.
It’s a shame this has happened to you
Hopefully a cure will be found
To help you and others in need.
Good luck to you –
You have made a difference
In the life of others
Including mine.

Elliot Never Ending

As you walk toward light
Of better days,
You make me wonder
For what the world pays.
How can you
The ray of shine
Have heart to walk
Along this line?
Your strength hold true
As your mark be made.
Thoughts of you
Will never fade.
For you look faintly
Upon the low.
Could it be a miracle
How do you know?
I cannot be told
Your heart beats undivine
For you are there
Making whole out of mine.
Your vision be held high
As you blow away
On that trumpet you hold
for not tomorrow, but today!
It is not the yellow
That makes the bus
It is the soul inside it
Which causes the fuss.
Elliot of nine
Be born today
You make our world
A better place to stay.

Tough steps to take,
Hard decisions to make.

Courage in his heart
Wanting a new start.

Living giggles and laughter
Dreaming of happily ever after.

Tingling toes
Life, before it goes.

Holding on tight
Fight Fight Fight.

Battle till the end.
Never descend

Elliot, good luck –
Never give up.

D-H Hybrid

Never lose hope, keep living your life to your best ability, always be positive. Never look down keep your head up for a cure may soon come and things will get better.

His nerves are dying, starting at his toes
from a disease that nobody really knows.
It’s tiring and terrifying
but having family and friends by his side is inspiring.
Everyday gets harder and harder
But as time passes he gets mentally stronger.
Being brave at his age is a hard thing to do
but with his perseverence, it’s easy for him to!

Never before has a boy fought so hard
Of a disease not even put on a sympathy card.
No one knows much of this dreadful disease
He can only hope of a cure, Oh please! Oh please!

Starts from his toes, and goes to his nose
Nerves in his body, dying in numbers
Muscles are leaving, never returning
His whole family, always concerning.

He needs help from any one possible
Lend a helping hand, make this tolerable.
Good luck to the brave Elliot Adler, give up never
Our prayers are with you, forever and ever.

Time is of the essence
How much damage will be done?

He starts to go numb
Starting from his feet
He hopes he can beat it.

Life is changing
Will it ever be the same?
Will Elliot ever realize how he got caught up in this game?

Hoping for a cure
Waiting brave and strong
Elliot will keep holding on.

Time is of the essence
When will a cure will be created?
Because everyone is wondering how much damage will be done?

Way to stay strong
Through all the hard times
Keep up hope
Possibilities are endless
So don’t give up now
Even though the disease is rare
There may be a cure
Keep on fighting
And so will the doctors
So hold on tight
And live your life

Being a little boy is an adventure of life.
It is most certainly worth fighting the fight.
Running, swimming and bike riding too,
Are all playful things that I cannot do.
Wishing to climb high to the top of a tree.
Oh, all the things I am striving to be.
With all of the struggles that I’ve had to face,
Why me? Why now? Why in this place?
Day by day I must live with this burden,
And most days people won’t see how badly I am hurting.
But I will go on living the life of a young boy,
A boy who struggles finding life’s wonders and joys.

Look ahead…
You feel like you’re sinking but don’t stop swimming.
You feel the water is closing in on you.
The brisk cold water shutting down your lungs.
Every breath is like your last.
You try to keep afloat… but you can’t!
You need someone to save you.
You feel alone…Desperate for someone to save you.
But don’t give up!
Keep pushing forward.
There’s always a way…
There’s always a way…
Don’t stop!
Look ahead…

There is a young boy with such a big heart
whose body is slowly falling apart.
this disease doctors dont know about
will never make Elliot strike out.
A boy with his heart will never give up
even when his muscles dont allow him to sit up.
I think everyone agrees
that this is a terible disease

Life will always be filled with struggles,
some more difficult than others.
But nonetheless we must fight through
We must hold our heads high and continue to fight.
But sometimes we face struggles that seem impossible to overcome.
For these we need the support of others,
our own will and perseverance is not enough
We cannot give up in the face of these difficult struggles.
Keep your head held high and continue to fight.
Together we shall overcome.

I wake up every morning.
I am grateful for this gift.
Seeing the world each day
Gives my heart a lift.
I realize that I am not
As strong as those near me.
But that’s okay, I don’t care
I won’t let that stop me.
Everyone is different
Of that I am quite sure.
Every day, though, I still hope
Doctors find a cure.
My muscles may be dying
But I will never quit
Living each day to the fullest
And making the most of it

From your toes to your nose
Stay strong and don’t let go

Leg brace?
A piece of cake

Impaired nerves you should not fear
The end may not be that near

Have hope and keep that smile.
Stay a child for a while.

Feeling may be gone forever
But you should not give up, ever

An eight year old boy
Diagnosed with a disease,
Not playing much with his toys
Or even feeling the breeze.

Just a boy of eight years old
And a cure not yet found,
But he does not frown
Before or after he’s consoled.

You have some plans
Of joining the band.
The disease will soon be banned
When someone gives you a hand.

Everyday’s a struggle
When you know you’re in trouble.
Waiting anxiously for a cure,
The chance of it coming you’re not sure.
So you tell yourself you’re okay
You ignore the doubts as you face the day.
And you show the world that you can do this.
You fight the disease and you are relentless.

A 9 year old boy with the fight of a man
Has a serious task at face and at hand.
Every step is a challenge for him
But he does not frown, instead he grins.
The disease is strong, and starts at his feet,
But so is his heart as it continues to beat.
His life is different from every other kid,
No one has walked in the shoes he is in.
Keep on fighting, I’ll be the biggest fan
Of the 9 year old boy with the fight of a man.

Everyday
Every day he turns to Bravery
CMT is his own personal slavery
Every day He looks for Hope
Will Adler give up?
The answer is no, never, Nope
Every day the illness is a hassle
Can’t enjoy his childhood like the “little Rascal”
Every day he feels and hears the bad news, Charcot Marie Tooth
Everyday Doctor must look to find a Cure as if they were a famous sleuth
Every day he feels his nerves dying, I know his parents are crying, on caring people he will be relying.
Every day we should support him as we were on the same team.
Every day we must so, Elliot can live out his dreams

He’s only nine and things arent fine,
Tripped up with CMT but no one really sees,
The courage that Elliot really has,
This disease would leave some people shakeing at their knees,
But not this young man, he’s got a master plan,
He’s going to live his life and never look back
The only thing I want to do,
Is give him a pat on the back.