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Kids Teens Young adults Parents JHD Friends Professionals


August 20, 2018

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:



I don’t have the gene but I do have HD!

by David McDonagh (2008/2009)

I don’t have ‘the gene’ - but I do have HD,
Let me explain and I hope that you’ll see.
I tested negative….and that’s just how I feel,
The counselling, the nightmares, it’s all so unreal,

It was in our family but we had no idea,
It came like a bombshell bringing such fear.
I live it and breathe it, it’s a part of me,
Wherever I go, whatever I see.

HD in your family is as bad as it gets,
The worst kind of illness… you just can’t forget.
Your brothers, your sisters, your kids all the same,
Watching each other for signs….such a shame.

Positive or negative, whatever’s revealed,
Your life changes forever, cannot be healed,
Why them… not me? Comes into my head,
I should have had it….not them… me instead!

Then I look at my wife, my children, grandkids,
And I feel so guilty for feeling like this.
But I still feel guilty for not having that gene,
So now, I hope, you can see what I mean.

It changes lives forever, it doesn’t go away,
The only thing to do is take it day by day.
You can fight it, ignore it, or simply hide away,
But with the help of those around, you can keep HD at bay.

It’s better to know… than live a life of fear,
It’s better to fight together, no matter how severe,
Don’t go it alone like some people do,
Let in the people who will be there with you.

The fact is, I am negative yet still have HD too…
It affects me in a different way, that’s undeniably true.
So I hope that I’ve explained, I hope that you can see,
I don’t have ‘the gene’ - but I do have HD.

Huntington’s Disease

by Anonymous

She tried to hide it,
But it didn’t take long
Before I began to notice
That something was wrong.

I was still young,
So I didn’t understand
What could be causing
The tremors in her hand

I was confused
And I didn’t know why
Dropping something
Would cause her to cry

Is this my fault?
Is it something I did?
I thought it was because
I was a bad kid

Year after year
I saw her get worse
It’s painful to watch
The disease take its course

Sometimes she’d get snappy
She would be hard to please
I had to remember
It was just the disease

Where did my mom go?
Will she ever be back?
She’s trapped in her body
And it’s under attack

Her movements are jerky
Her arms are always flailing
I cry because I know
Her body is failing

Now, she can’t walk
And she struggles to stand
The things that she says
I can’t understand

I admire her courage
And I will always love her
No matter what happens
There are angels above her

I have to be strong
I do my best to care for her
I love her so much
I will always be there for her

My little sister is 10
And I try to keep her protected
I try to keep things normal
But I know she’s been affected

I’m worried about my sister
On the outside I’m calm
But she needs more than I can give her
And I can’t be her mom

Sometimes I feel hopeless
I have to get through this
I’m scared, and I’m not sure
How much longer I can do this

Sometimes I wish
My dad were still here
It’s weird how some people
Can just disappear.

I need to stay strong
And I worry everyday
That someone will come
And take my mom away

I wonder what she’s thinking
If she’s even aware
But then I look in her eyes
I can tell she’s still there

I can’t ignore the facts
But I wish they weren’t true-
There’s a 50% chance
That I have the gene, too

In my hands I will get
A tingling vibration
Is it a symptom?
Or just my imagination?

I try not to worry
About what’s unforeseen
I have lots of time-
I’m only fifteen.

Sometimes I leave
And go out with my friends
But then I feel guilty.
The guilt never ends.

If there is a God,
Why is he so mean?
Why curse our family
With this terrible gene?

I’m sick of this disease,
Of all the pain and frustration
If I test positive, I swear
I’ll be the last generation.

In a life of uncertainty
There’s one thing I’m sure-
One day, some day,
There will be a cure.

The Lost Generation

by Trish


Putting on her blazer as she leaves home for her classes,
Lucy kisses daddy’s head whilst stroking as she passes.
Daddy doesn’t smile at all, or conversation start,
Lucy closing door behind her, sadness in her heart.

School is over, Lucy home, she goes straight up the stairs,
Mum is chatting to the doctor, daddy unawares.
Lucy knows she’s not included, mum thinks she’s too young,
Yet shortly after doctor leaves her day is just begun.

Helping with the tidying she makes them cups of tea,
And listens to her mothers' day whilst trying to watch TV.
She’s told her mum her day was fine, she didn’t want to add,
To her mother’s stressful day by saying it was “bad”.

Feeding daddy, wiping spills, to give her mum a break,
Lucy counts the tablets out, which hopefully he’ll take.
Lucy broaches asking mum “what did the doctor say?”
“Nothing you need worry about” and then mum walks away.

Tired she goes up to her room, her homework to be done,
Double Science class today, genetics wasn’t fun!
HD covered, cold as science, little do they know,
Just 14 she’s tired of HD, nowhere she can go.

Huntington’s Disease Poem

A 12 year old at Risk

You are a killer,
A disease from satin,
You make lives miserable,
Over the Ages.

I lost so much,
To you in life,
You ruined the days,
That I loved the most.

Loved ones are gone,
My heart is broken,
But somehow we live,
Knowing that you’ve spoken.

Through the pain,
And through the hurt,
We cope together,
With the family we love.

With someone there for us,
We understand each other,
Meeting new people,
Whom we can trust.

They understand us,
We get them,
Together we fight,
For a cure within.

I cannot wait,
For summer this year,
To see convention faces,
Whom I near missed.

R.I.P All who have died from H.D
There is a hope

By Natalie

they said to look for a sign,
I chose not to listen my body was mine,
apparently it runs in my blood line,
they said her body, his body, mine,
I tried not to listen and put it behind,
but family and friends are not deaf nor blind,
it’s the guidance of HDYO that brings it to mind,
without understanding the world wouldn’t be kind,
without the courage I would not find,
of course who would want this disease in life?
the upsetting torment the pain of strife,
it’s the impact of my soul it defies me of who I am
and makes me a hole so I may smile of what everyone sees!
but deep down I’m a sufferer of Huntington’s disease!

Fifel’s poem for her friend with JHD…

Trying to ignore the time bomb that is ticking in the corner
I could run away, to avoid being there when the explosion takes place
But instead I bury my head in the sand
As if not thinking about it will mean none of it is real

Not knowing when, but knowing it’s soon
Never knowing which goodbye will be the last
Planning things we will to do together
Ignoring the reality that her future might not last long enough

Day out, parties, holidays, sky dives, spa days…
as much as we can fit in
making the most of every moment,
creating memories that will last forever.

Is it right to ignore the time bomb that is ticking in the corner?
Is it ok to tell myself that it is not really there?
There’s not long left to enjoy each moment with her
I don’t want to grieve until she is gone.

The Sleepless night

By Tiffany, 22, Canada

As the clock ticks on, another second of my life is gone.
I get lost in the fear of tomorrow, that takes over today.
They say don’t think about it, but they don’t understand.
Having HD or not, I am affected.

The risk, the chance, 50% yes, 50% no.
The day will come when I know for sure.
Until then, I wait and try to think of something else.
HD will not control me, I control me.

I’ll think of something else, while I try to fall sleep.
I close my eyes, and force them to stay shut.
If they are closed for long enough, I will doze off.
HD will not control me, I control me.

Tick tock, tick tock, tick tock,
The night passes on, and I cannot sleep.
I told myself I was in control, but something’s not right.
Huntington’s disease is taking over.

It’s hard to live, when you know the risks.
We hope for a cure, and pray for some hope.
When does this end? Where is the cure?
I cannot let HD control me.

I remind myself, I am me.
I need to live, I need to be young.
My youth feels as though it is gone forever.
Why do I let HD control me?

I can’t vocalize my thoughts, but I hear them each day.
Time passes on, and my hand starts to shake.
That must be the disease, although I am only 22.
I convince myself my HD is here.

The world, the outsiders cannot feel our pain.
Never knowing the truth, it takes over my day.
People kill others, while diseases kill us.
I will not let HD kill me.

Eventually the night gets blurry, my mind turns off.
I dream of loved ones, that are in heaven above.
I wake up to tears on my face, and realize the truth,
Huntington’s Disease is my reality.

By Melissa, 25, Canada

When you’re a kid and people ask you what you want to be when you grow up, you think you have your whole life ahead of you.

In a way, that’s true. You’re at the beginning of something that will essentially last a lifetime. Although sometimes, when you think your life is just beginning, that point when you figure out what you are capable of, you realize you don’t have as much time as you think.

It could be cut short; a lot shorter than you assume as a child. You start to question what you’ve done with your life so far-was it worth it? Have I experienced everything I want to experience?

Naturally, you think of all the regrets you have, all the time you have wasted in a way. You start to wonder, is it better not having a deadline looming above your head? Is it a curse or a blessing in disguise?

Either way, all good things must come to an end. You try to convince yourself nothing lasts forever, even though you know you somehow drew the short straw.

You can’t run from it. You can’t escape it, but at the same time, how do you deal with it? People around you (the outsiders) don’t understand. How could they?

It’s barely something you can wrap your head around yourself. It’s really all encompassing. The best you can do with the short straw drawn is to try and be as close to that person you wanted to be when you were so young. Because, in a way, you still have a lifetime ahead.

Clara, Germany

If I could do something
To you again, to put a smile on the lips,
Believe me, I would do it.

If I could do something
Around your eyes again to bring to light,
Believe me, I would do it.

If I could do something
To give you even one day without fear,
Believe me, I would do it.

If I could do something
To you again to give you the feeling that you are strong and can do anything,
Believe me, I would do it.

If I could do something
In order for a day to exchange with you the body,
Believe me, I would do it.

If I could do something
To make you healthy
Believe me, please believe me!
I would do it …

By Clara B

I was there,
When powerful jumping became saggy steps.
Until your legs lost their power.

I was there,
When your straight back became buckled.
Until your shoulders twitched powerlessly.

I was there,
When your laughter became an uncomprehending snicker.
Until it yielded a powerless smile.

I was there,
When forceful words became powerless whisper.
Until you only understood what you wanted to say.

I was there,
When your bright gaze became hate filled with fear.
Until your eyes became cheerless.

And while you are dying a little bit each day
I discover your life bit by bit.

By Kayleigh Martin

25 June 2013

I’ve feared it has
been haunting me always.

And so I sew
pieces of wiggle
into the threads of me.

Practice for the future?
Love of movement?
Is this not a product
of what I’ve always
been meant to be?

Or the oar that I
use to move 1,000 tons
of worry?

Is it not a coincidence
that I’ve chosen to
avoid jeans over
the last month?

Cares not about your
wardrobe, nor the saint
like demeanor of your father.

Left hand, brown eyes, heart face.
So tell me, am I not being hunted?

…No wait, I’ve always been
hunted. I’ve tracked myself
for years.

This adds up and
I know I’ve already
led a life of dis-ease.

What difference do
these tests make? They
are simply quizzes in a
life that I have already
hunted a ton.

Let it go, let life be.
So I’ll wiggle,
or I’ll wiggle freely.


By Hannah

1 March 2015

You all walked around with a wobble, I can’t now believe you were in trouble
I watched you all deteriorate in front of my eyes. I can’t believe how many people have lost there lives
That damn disease took you all, and now I can no longer stand so tall
My grandad my dad and my two brothers, all gone but never forgotten
You all battled to try and mend, but huntingtons took you all in the end
Its taken you all and more, when will this world stop and open a new door. huntingtons disease, cancer, muscular dystrophy and all the more. I pity these illnesses for creating this war
I love you all and always will so remember that you were all brill.
Grandad,Dad,Thomas and Luke my four amazing angels. sleep now and forget your troubles
You can all sleep tight. and remember I will always be looking for you in the star night
Love you all your granddaughter Daughter and sister xxxx

She Will Dance

By Leah Barker

She moved mountains the day when she made her choice.
In her 50/50 chance, she has been searching to find her voice.
Forty-nine days goes by faster than she had hoped
And the clock on her wall ticked louder and louder the faster that day approached.
For months, she pursued a hope that ran faster than her thoughts
But it became stuck within the endurance of time racing on her clock.
In sleep, hunger, and happiness, she quickly became deprived
And she couldn’t quite form a word for what she was feeling, but it was utterly close to terrified.
As certain as the flip of a coin, her future was unfolding
Forty-nine days goes by too fast, and she thinks back to what the genes in her dad could possibly be composing.
She looks into his eyes and sees the guilt that he tries to hide.
This disease will either take them both, or leave her with an undeserving remorse that she will also try to disguise.
The clock on her wall finally led her to this day.
Her lover grasps her hand in his, stronger than he was yesterday,
And she holds firmly in the other hand courage, unaware that it will never fade away.
But the doctor’s head hangs low, and her head starts to spin
As he apologetically claims “Positive,” she feels like a stranger in her own skin.
She doesn’t know that the tears she will shed represents the emotion embodied in thousands,
Though she feels weak, she will heal and move mountains.
Though she feels alone, she is unconditionally surrounded.
Though she feels afraid, she still grasps courage in her hand.
Though she feels like she is drowning, her feet are firmly planted on dry land.
She walks out the door with her head hanging low.
“Sweet girl, there are flowers blooming inside of you, and there is so much you don’t know.
The seeds that you planted long ago will now flourish more forcefully as you continue to grow.
You’re a fighter, a lover, a daughter, a friend,
And your purpose in this world does not change now-it begins.
Take my hand, and I’ll show you. I’ve been there before.
You can be the solid land, and I’ll be your shore.
You’re not alone, and above all, I want you to realize
That after the long shadows of night bring tragedy, there is a breathtaking sunrise.
It will come.”
And she heals herself, taking it day-by-day; with each breath, she’s revived
And the scars left behind show what she’s been through-and survived.
Though she is small, her sickness makes her a force to be reckoned with.
She knocks down every roadblock, and her target, she will never miss.
Though someday she will be robbed of her body, her mind, and her smile,
She will take back every minute of it, and make every movement worthwhile.
Her twitching, her falling, her spinning and her prance-
She will refuse to call it disease, so she names it her dance.
And dance she will, until her very last breath.
Her choking will be called singing, and relaxation will be the name of her brain’s death.
She embraces it now, and holds on to her hope.
The tears in her eyes will only show her soul’s kaleidoscope.
Look out world, because she will take every chance
To spread love, move mountains, live fully…
She will dance.


Miza’s Poem

I live with HD
But do I have the gene?
I watch it walk around me
Even when I know
That someday I will have to care for tho’s
And why should we have to care for such
a horrible thing
Well because it’s took someone so special
To me
I sit there and wonder
The question no-one wants to say
More years to find out what my life awaits
Maybe my body knows
But I do not know things
It changes things
It changes you
Your loved ones need you Sit by there side
Do anything with them as long as your
I will help HD in a way that I can
And in a way I feel happy and proud

For Mum - Anonymous

I stare at the ceiling
Just another night
Why does this happen
I start to cry

She struggles to balance
To find her way
Things are hard now
They won’t be the same

My world crumbled as he shut the door
He left us lonely
I knew you didn’t care dad
a tear rolled down my cheek

Though you jerk and fall
Your strong
Still my hero
Your my mum

Yes I might not express
They way I feel
But that’s okay
I prefer to conceal

2 years pass
And we are not together
I love you no matter
And see you whenever

7 years down
Aged 15
You live in a good home
And are now never alone

I’m still mad at you dad
But I’ll never tell you
Because I know mum wouldn’t want it
Although still wish things were different

I love you for infinity
My idol
My hero
My mummy