Category: poem

Aniridia poetry international competition results

by Aniridia Day, posted in 2017, News, poem

Woman and child wearing sunglasses and medals runningCongratulations to Angie in Canada, the winner of our international poetry competition!

The poems were judged by an international panel from the aniridia community:

  • Katherine Atkinson – UK
  • Galina Gening – Russia
  • Kelly Trout – USA
Kelly who is Health Consultant for the International WAGR Syndrome Association said “You didn’t tell me that it would be so hard! Every poem is just so heartfelt and creative and beautiful.”
Runners up poems were judged to be “To Patients with Aniridia”, “Bekah’s Aniridia” and “My Blue Black Eyes”.
All the poems were excellent and more poems were entered into the UK’s competition but this was decided to be the best in the world!:

Poker Pearls

Rare, black beauties, fragile yet hardened,
Etched by life and plagued with pains.
My grandfather’s poker pearls, then my mother’s,
And now passed on to me.
A rarity and a curse for this family tree.

Unclouded jet blacks in youth I had.
Now I peer through frosted, flawed glass.
What is happening? Why can’t I see? Why can’t we cure this?
I can’t breathe.
Tired, I must protect these wounded gems.

So many questions, my life, an endless quest for answers.
Hoping, Wishing, Searching, through my years.
Familial, sporadic, unknown origins, does it even matter?
I discover and stare at molecular language in dismay.
It’s those broken polypeptides chains hurting my poor Aunt May

Dreams for a future looked dried up.
Please hear me, teacher, I won’t ever give up!
So badly I wanted what others had, unrestrained, easy lives.
Forbidden thoughts of careers kept crowding my mind.
How do I escape the legacy that dictates what I can never be?
How will I prove wrong and succeed?

Now I stare at blessed perfection, my own reflection in young healthy poker pearls
Time will not remain kind you see.
Uncertainty, Anxiety, Fear grips me
I can’t sleep.
How do I stop it, history’s cursed legacy?

Wishing she’d been gifted the root beer browns like the Richardson’s
Or the ancestral arctic blues as did her cousins, the Morin’s.
I broke my own heart gambling as she received those eerie blacks of the Rossignol’s.
In absolution, I must find strength and courage through my progressive losses
To keep these little black time bombs stable, no matter what the cost is.

Don’t worry so much maman!
My young Rossignol chirps me sweetly out of sorrows
The surprises of these poker pearls are for tomorrow. 2017

Prats logoEschenbach logo

Eschenbach and Prats provide prizes for Aniridia Day campaigns

by Aniridia Day, posted in 2017, News, poem, Shining Success

We are ecstatic to announce that two companies have very generously donated high quality sunglasses to be prizes in the Aniridia Day 2017  competitions.

The deal was arranged by Isabel who volunteers in Spain with Asociación Española de Aniridia.

The author of the poems judged to be the best in each of the Spanish and international poetry competitions will receive a pair of sunglasses with unisex frames, lateral anti-glare and lenses that block 100% of UVA and UVB rays made and gifted by:

  • Prats Industry: experts in low vision that make filters for individuals with specific ocular pathology.
  • ESCHENBACH: experts in vision technology products, eyewear, and optics.
    Prats logoEschenbach logo

We want to thank Prats and Eschenbach for their support with making the first ever Aniridia Day so great!

Two further pairs of sunglasses can also be won by the best submission to the Spanish and international Shining Success campaign.

Judges and result

The poems submitted to the international competition will be judged by:

  • Katherine Atkinson – UK
  • Galina Gening – Russia
  • Kelly Trout – USA

The winner and their poem will be announced on social media on Aniridia Day 21 June 2017. Please share the news.

Aniridia poem competition UK results

by Aniridia Day, posted in 2017, poem

Aniridia Network UK have excitedly announced the winner of the UK and Ireland aniridia poetry competition plus the awarding of a special prize.

“I was impressed with the outstanding talent.” said judge and trustee Emily. We were delighted to receive 10 poems, as hoped a range of types, with different sentiments and from patients, parents and friends of all ages.

The judging panel, trustees Katie, Emily and Martin picked Katherine’s poem as the best, because it referred to many aspects of our condition and the spirit of Aniridia Day. She has won £20 of Amazon vouchers and her poem will be submitted to the international poetry competition where it could win a further 25 Euros.

Katherine said “I’m so thrilled my poem was liked and won! This is the first time I’ve ever shared one of my poems before in public so I was nervous!”

In addition, 9 year old Ellie wrote a lovely acrostic poem that got more than 43 Likes on Facebook. To recognise this the judges decided to award her a special £10 Amazon voucher prize! Ellie is really pleased that everyone liked her poem. She is absolutely thrilled with this news and she is very proud of herself.

Thank you to everyone who wrote poems, for spreading awareness and understanding of aniridia. We hope you and everyone else will take part in ‘Shining Success‘ the next part of the Aniridia Day 2017 campaign.

The winning two poems are below and you can read the other poems that were entered too.

Congenital Aniridia

Katherine

Aniridia is congenital in my family tree.
My mother, my daughter , and yes even me!
The cause PAX6 a faulty gene.
A condition most doctors have never seen.
With eight different eye conditions I am registered blind.
Using a cane or guide dog, my mobility i’ve been able to find.
Nystagmus, ptosis, cataract and photophobia.
Keratitis, diseased corneas and myopia.
Diagnosed with and treated. All these conditions i have got.
Due to this i have to visit my eye specialist a lot!
Sometimes this rare condition can make you feel alone!
But now thanks to the aniridia community I know I’m not on my own!
So please on this first ever Aniridia Day!
Let’s celebrate our uniqueness in each and every way!

By Katherine

Follow your dreams

9 year old girl
Ellie

Aniridia does not mean you cannot follow your dreams!
No irises sometimes mean that things are much brighter!
If it’s a sunny day sunglasses and a hat help me play!
Running is tricky when you can’t see well, but my friends always guide me safely until we hear the school bell.
In the dark I use a cane, because bumping into things causes pain!
Discos are dark, so it’s hard to see, but I love dancing so everyone helps me!
In class I sit at the front so I don’t miss a thing!
And sometimes my eyes will sting, so I just put some eyedrops in!

By Ellie, age 9

Bekah’s Aniridia

by Aniridia Day, posted in 2017, poem

An entry to our international poetry competition by Dodie from the USA

Missing irises make her eyes dark like coal,
So her smile is the window to her soul
Uncontrolled eye movements make eyes flutter all around
glaucoma and cataracts also found.
Shadows can be scary, sometimes lights to bright
needing reassurance, everything will be all right.
I’ve heard her tell herself out loud, “It’s nothing to worry ‘bout”
a silly shadow on the wall, can’t hurt me at all.
Listening to music, she claps most vigorously
sound is very important, in a world that’s hard to see.
She wants to be included treated just the same
whether going down a slippery slide, or playing a card game.
She often can be found with a book, sometimes turned upside down
making up a silly story about a kitten or a clown.
Her enthusiasm brightens up a room, her singing a delight
she also can be stubborn, and won’t give in without a fight.
My wish is for hope, new technology, invention and insight
to help treat this rare disorder,  I offer prayers up every night!

Poetry and art together from France

by Aniridia Day, posted in 2017, poem
This entry to our poetry competition and comes from Daniel in France.
The words of the poem have been very cleverly formed in to a spiral to resemble two aniridic eyes with the eyebrows formed from from the title 'Aniridia'

Aniridia

His iris is absent
His black eye is pregnant
His look is haggard
His view is a fog
Light is his embarrassment
The colors mishandle
The flash is his torment
The blur is erroneously
The deadline for submitting poems, directly or via national competitions is the end of Friday 9 June so don’t wait to write!

To Patients With Aniridia

by Aniridia Day, posted in poem

A boy wrote this poem for our competition.

To Patients With Aniridia

God wanted you to be unordinary,
Aniridia can be tough hard and scary…
People may judge you by your default,
But you should know, that it’s not your fault.

Did your life go the worst?
-You are alive and you still happy?
– Yes, of course!
I know only one thing right,
Your whole life is a fight!

You have pain every day,
But you brighten this world in every way,
You feel like there is no hope,
We know, it’s hard to cope…
But if u believe in yourself,
Sooner or later u won’t need help.

So look at the bright side and live,
People will hurt you but you have to forgive,
Believe in yourself , there is HOPE
You can live on a string or live on a rope!

My Rare Disease

by Aniridia Day, posted in poem

A poem about aniridia from Elena from Ukraine.

I’ve got a great idea
To tell you about aniridia.
I was born with this rare desease,
And at first mum couldn’t stop her tears
However, she quickly changed her mood
When she understood,
That her nice little girl
Is the best in the world.
My parents will always believe,
That our problems will leave.
I’m very unusual girl
But the prettiest of all.
My eyes are fully black,
And I have limbal cells lack.
It’s hard to walk when there is sun,
So I must go out after it has gone.
I have always running look
In addition, it’s impossible to read a book.
The wind is also rather harmful,
Moreover, it isn’t easy at school.
Despite my iris is missed
I like often to be kissed.
Unfortunately, I can hardly see
But all around love me.
Sunglasses are my friend
Because they can defend.
I’m sure my rare eyes
Will attract to me many guys.
It might strangely sound,
That not many aniridic people are found.
But I know many children who are the same,
And one day some of us will have fame.
Nowadays I have good friends
Who are always ready to lend their hands.
Yes, I’m one red tulip in the field
But in future the doctors will have yield!

My Blue Black Eyes

by Aniridia Day, posted in 2017, poem

Entry to our poetry competition from Greece

Somebody asks me to

What s going on with you
Can’t find the difference
Iris i used to know
Colours of all i show
Don’t make a reference
Then i stand up and say I am the one who made
This world’s innovation
Have something real rare
A new colour to refer
My blue black mutation
I see the big
i see the huge
My eyes out of rules
I feel the right my eyes so bright
Can dance all the night
I look at you I pray for too
Can do what you do
No more despair
You’ll see me there
My eyes can dare
Maybe it ‘s a bit of hard
But if we all take part
The miracle is coming
Sing all this song with me
Believe it and you will see
Aniridia will vanish
Wear on my sunny glass
Never i use the flash
Cause iris is absent
But i realize so long
Everyone can be strong
Despite of his lackness

Poker Pearls

by Aniridia Day, posted in 2017, poem

An entry to our international poetry competition by Angie from Canada by Angie

Rare, black beauties, fragile yet hardened,
Etched by life and plagued with pains.
My grandfather’s poker pearls, then my mother’s,
And now passed on to me.
A rarity and a curse for this family tree.

Unclouded jet blacks in youth I had.
Now I peer through frosted, flawed glass.
What is happening? Why can’t I see? Why can’t we cure this?
I can’t breathe.
Tired, I must protect these wounded gems.

So many questions, my life, an endless quest for answers.
Hoping, Wishing, Searching, through my years.
Familial, sporadic, unknown origins, does it even matter?
I discover and stare at molecular language in dismay.
It’s those broken polypeptides chains hurting my poor Aunt May

Dreams for a future looked dried up.
Please hear me, teacher, I won’t ever give up!
So badly I wanted what others had, unrestrained, easy lives.
Forbidden thoughts of careers kept crowding my mind.
How do I escape the legacy that dictates what I can never be?
How will I prove wrong and succeed?

Now I stare at blessed perfection, my own reflection in young healthy poker pearls
Time will not remain kind you see.
Uncertainty, Anxiety, Fear grips me
I can’t sleep.
How do I stop it, history’s cursed legacy?

Wishing she’d been gifted the root beer browns like the Richardson’s
Or the ancestral arctic blues as did her cousins, the Morin’s.
I broke my own heart gambling as she received those eerie blacks of the Rossignol’s.
In absolution, I must find strength and courage through my progressive losses
To keep these little black time bombs stable, no matter what the cost is.

Don’t worry so much maman!
My young Rossignol chirps me sweetly out of sorrows
The surprises of these poker pearls are for tomorrow. 2017

Hello World, I will be born with aniridia

by Aniridia Day, posted in poem

Winner of the poetry competition among the Russian-speaking countries

 

Hi, everybody , Hello world!
I am a just a few hours old
And I’m still not with you,
But I live and I already love you …
I live and my destiny challenges me ,
I already know who I will be,
I know, I can choose my mom
And I will choose this one …
She is an angel and she needs exactly me…
Hi, everybody, Hello world!
I am a just a few weeks old
And I’m still not with you ,
But I am already breathing and I love you…
I breathe and I know what my mom thinks,
Mom, I’m sorry, but I’ll break your dreams,
You see me perfect in your plans ,
But not everyone has this chance …
I know, it will make you sad …
To have Aniridia it’s not so bad …
Hi, everybody, Hello world!
I am a just a few months old
And I’m still not with you,
But I see the light and I already love you …
I see the light through closed eyelids,
Soon it will be completely different
But I will accept this and I will be strong…
Some people will not understand
But not you… You are my mom…
You are waiting for me and after few hours I will come!
Hello world, hello blinking!
I took my first breath, you heard my first crying,
I am crying for a long time…
Why?
Because then it will be a crime )))
I’m a strong person, I will not cry anymore…
Everything is so simple What for ? …
So simple? So strange , so crossable!!!
But we are together- it means everything will be possible!

Russian text written by Urina Julia English version by Ramy El Desoki Film made by Brunkovskaya Marina Text read by Brunkovskiy Dmitriy