Toys for visually impaired children

It is not always easy to know what toys to buy a child with a visual impairment, so here are some thoughts and ideas to help you.

You don’t need to buy toys from specialist suppliers. Choose toys that will make the best use of any vision they have, and that develop other sensory skills such as the sense of touch and hearing.  Older children will no doubt want the latest toys but the same criterion applies.  Hopefully the following checklist will help.

Small girl wearing dark glasses feeling a tactile book while knelling on the carpetProvide toys that:

  • encourage using eyes to follow an object and physical movement: bubbles, balloons, hand puppets, balls (scented, lit, sparkly), pull -long and wind-up toys, cars, train sets.
  • encourage hand-eye co-ordination and/or fine motor control: posting toys, inset puzzles, bricks, beads, peg boards.
  • have interesting textures: feely bags, soft toys, balls, building blocks, Duplo
  • make sounds: bells, chains, beads, wind chimes, rain stick, music makers and instruments, feely bags (fill with cellophane, beans, rice etc), books with audio features.
  • are reflective, fluorescent or bright: foil survival blanket, cheerleader pom-poms, torch, metalic or push button light up toys
  • have scents: make playdough with scented oils, scent bags filled with herbs
  • feature switches/controls that are easy to find by touch
  • have bold lettering and strong colour/tone contrast

Check out these links for sensory toy and play ideas

Make sure toys are safe

Look out for this symbol! red circle with a red line running along its diameter at a 45 degree angle. Inside the circle is a cartoon of a child's face and text that reads '0-3' Toys with this symbol contain small parts that could be swallowed and cause a choking hazard. They should only be given to children over 3 years and of sufficiently advanced development. More information about toy safety symbols.

 

 

 

 

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Blossoming at college

16 year old woman with a two-tone green ribbon in her hair

Katherine’s daughter

I wanted To share a very special week with you all. My daughter who has aniridia performed at her first college dance performance this week.

She was amazing. She reduced me to tears she was memorising honestly. To all those worried about their children or keep being told by school negative comments, I’m letting you know don’t worry about them. They are amazing …keep fighting for their dreams. She performed alongside her peers. She kept up and delivered a performance of contemporary and street dance, from which nobody in the room would have a clue she was visually impaired and had learning difficulties. 

She has settled in college and for the first time in her life she is making close friendships and is loving every second of her course.

Fighting for this and believing in her was the best decision of my life. She is blossoming in to a beautiful young woman and a wonderful dancer. 

By Katherine

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Boxing Fundraiser for ANUK

On Thursday 30th November, David Simpson will be taking part in the Judgement Day charity boxing contest at the York Hall arena in Bethnal Green, London.

The event itself is raising money for Action for Children, but each boxer can also raise money for the charity of their choice.

David has chosen Aniridia Network UK as his charity, for which we are very grateful!

He has never been in a boxing match before, and he has had just 12 weeks of training to prepare. So it will be a big challenge.

You can donate on David’s fundraising page. A very generous £500 has been given by boxing legend George Groves, while kind donations from many other people have taken the total to well over £1,000 already!

If you’re a UK taxpayer, please select Gift Aid when donating. This allows us to claim an extra 25% on top of your donation from the government, at no extra cost to you.

Many thanks again to David for choosing to support ANUK, and to everyone who has sponsored him. We wish him all the best for the event!

A shadowy figure of a boxer emerges from the dark background, above the text Judgement Day, White Collar Boxing, Thursday 30th November, Doors open 6.30pm, World Famous York Hall.

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London meet-up 2017

Aniridia meetup group sitting around a long table in Caffe NeroThis evening we held an informal get-together in London, after the excellent, free Sight Village event. We met at Caffe Nero, 1 Wrights Lane, Kensington, London, W8 5RY.

The meetup was hosted by James, one of the ANUK’s trustees, and volunteer Glen, both of whom have aniridia themselves.

People of all types and ages were there, including a retired person with aniridia, a friend of a patient, a guide dog owner, and a parent of a 6 month old baby with aniridia.

Some people were familiar faces from previous meetups in 2016 and 2015, so it was great to catch-up with them. And for others it was their first time, so it was wonderful to get to know them and introduce them to everybody.

We spent a few hours chatting over coffee and hot chocolate, sharing stories, experiences and useful information. It was a lovely evening and the time flew by.

Thank you to everyone for coming.

If you want to organise a meet-up for people interested in aniridia in your area, like this one, it’s easy to arrange. Just email meetup@aniridia.org.uk.

A few members of the aniridia meetup group chatting in Caffe Nero

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How I See & Building My Social Network

My name is Glen, I’m 34 and I was born with aniridia and nystagmus. I recently gave a brief description of these conditions in this video for the RNIB’s How I See campaign, which has been shared widely and had a great response.

This has also been a very big year for me, because last Christmas I moved to London from the Westcountry, which was a very big change as you can imagine.

As a result, I had to try and build a completely new social network for myself, so I didn’t become lonely and isolated. And it was a very daunting prospect, so I did a lot of research and tried my best to push my nerves aside.

And it’s been working out very well, I’m happy to say. By joining social groups and going on tours, as well as posting on my blog and my Youtube channel, I’ve been making many new friends and enjoying many new experiences.

One such connection is James from Aniridia Network UK. Since becoming friends, I’ve started to help him with the communications for charity. We both worked on the promotional film for Aniridia Day earlier this year, and I’m gradually getting more involved with managing the Aniridia Network UK email newsletters and social media.

I recently gave a public talk on how I’ve been building my social network, and have also made this video and a post on my personal blog discussing it. My key advice is to search for groups and activities that interest you and give them a go, with the right support where necessary. It sounds obvious, and I know it’s easier said than done, but once you get started, it soon gets easier, believe me. And you may well be surprised what results from it.

 

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Attending the Genetic Alliance Conference 2017

Today Genetic Alliance held their Annual Conference in London, entitled “Upskilling Our Members”, with many charities taking part.

Aniridia Network trustee James Buller attended the event, taking the opportunity to engage with many leaders of charities very similar to our own, asking questions about the challenges we face. And he was able to help them too, such as advising on the use of Twitter.

Pauline Broomhead giving a presentation about Brexit at the Genetic Alliance Conference 2017

Speakers at the event gave updates on the achievements and future plans of the Genetic Alliance, and details on some of the latest research into rare diseases. The ongoing worries about the impact of Brexit on funding and collaboration on research into rare genetic diseases was also a hot topic.

Various workshops were held during the afternoon, with topics including social media, fundraising, specialised clinics and support services. James went to ‘Providing support for your community’, featuring speakers from the Breaking Down Barriers project and East Lancashire Community Genetics Team. The workshop promoted understanding of how genetics causes conditions and how to provide supportive and inclusive services to families. James proudly mentioned our own befriending scheme in that vein.

It was a great day, enabling charity leaders to share valuable information, views and experiences. More information can be found on the Genetic Alliance website.

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New Treasurer and bank

We have a new Treasurer. Emily Nash took up the role at the start of March 2017.

Trustees Katie, James and Martin voted to co-opt Emily on to the Board at their February meeting. The post had been vacant for several months after the previous holder, Ben stepped down due to lack of time.

EmilyEmily says “I qualified as a physiotherapist and now work as a Clinical Quality Manager for a national private rehabilitation company. I have two small children who both have aniridia and I live with them and my husband just outside Cardiff. I love the countryside in Wales and have a mountain view from our house. I enjoy spending time with my family and getting outdoors as much as possible.”

“I decided to volunteer for ANUK as I wanted to meet more people with the condition. Prior to my son being born in 2014 I had not met anyone of a similar age who had aniridia. This role will also give me the opportunity to learn more about the running of the charity and offer me the opportunity to learn new skills that will be good both for my own personal development and my career.”

“I have sporadic aniridia and was registered severely sight impaired in 2016. I have had glaucoma for over 10 years that has been controlled with medication. I have had surgery for cataracts and a stem cell transplant on my cornea.”

Chairperson Katie, said “We are really pleased to welcome someone new on to the team, bringing different skills, ideas and perspectives. We can now push forward several initiatives that have been on hold while we lacked a Treasurer”.

The trustees are jointly responsible for all aspects of running the Aniridia Network UK charity. As Treasurer, Emily’s focus is on the financial issues.

She has made a great start with her first task of finding better banking services. ANUK has banked with CAF Bank run by the Charities Aid Foundation for the last 6 years. However we’ve found several issues with their online banking facilities, means of making deposits money and paper based administration of signatories. Lately they have started charging £5 per month for their services.  We have also just closed our old Co-op Bank account to simplify our finances.

Emily surveyed the market and identified Lloyds Bank account for charities as the most suitable – being free and having high street branches where fundraised money can be paid in. We were pleased to hear too, that the online banking system is accessible for screenreader users which our officials often are.

We have opened an account and will trial the service to see if we should switch to it. We also hope to get a debit card so we can make payments online as an organisation – to avoid the hassles of invoices and volunteer expenses claims.

Emily is now familiarising herself with the charity’s systems, accounts and legal requirements. Her next task will be to allocate our funds into categories for every day use, reserves and medical research. We are also considering the idea of setting up a small grants scheme. Along with Trustee Martin, she will also be responsible for improving our fundraising activities.

Martin, Trustee and Head of Volunteering and Development said “We are very grateful to Emily for using her time to help ANUK. It’s only with people like her that we can give people affected by aniridia, plus those who work with them, the support they need. I hope others will be inspired to pitch in, to help us do this more and more.”

The trustees plan to meet in person for the first time in November at the Trustee Conference run by National Council for Voluntary Organisatons (NCVO), where they’ll learn about topical issues.

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400km in 1 day fundraising bike ride

Matt wearing a Aniridia Network UK tshirtMatt rode his bike 408 miles from London to Worcestershire and back again, in one day to raise money for Aniridia Network UK.

He set out at sunrise and rode as the temperature soared to 40°C. He retuned 15 hours later to London at sunset having drunk 15 litres of water, and burned 10,000 calories!

The Justgiving page for the feat shows that Matt has raised over £4,400 including Gift Aid!

Mat said afterwards “Thanks for the very generous donations and kind messages of encouragement. I have to admit I’m pretty shattered – no amount of water cools you down on a day this hot. Job done, body has held up! For my side of the bargain:

  • Matt on a hill standing holding his bike over his headMaximum speed 71kph
  • 3500m climbed
  • 1 sense of humour failure
  • 1 fjord crossed
  • 0 punctures  “

Matt was motivated by the experiences of his friends and their 18 month old son Finlay who has aniridia. They learn more about this rare eye condition as Finlay grows and immensely value the expertise of Moorfields Eye Hospital, but particularly the guidance from Aniridia Network UK.

The money Matt has magnificently raised will help us ensure children parents and adults affected by our rare and complex eye condition are hopeful, confident, supported and well informed about aniridia. It will fund increases in the extent and quality of our events, services and literature. We also plan to set up a fund for medical research into treatments for the effects of aniridia. Together, with the help of people like Matt and those who sponsored him we can improve the understanding and hence the lives of people dealing with aniridia.

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Aniridia poem competition UK results

We are elated to announce the winner plus the awarding of a special prize in our Aniridia Day related poetry competition.

“I was impressed with the outstanding talent.” said judge and new 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.

All the poems entered into the UK competition are below starting with the winning two.

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

The complete set of poems we received are:

Through my two eyes.

From birth to toddler, to many more years.
I wear glasses upon my ears.
Enlarged font to make it clear.
Front of the class to accomplish my work.
Those so grand for always giving a helping hand.
Sunglasses on when it’s sunny and bright to protect my eyes from the beautiful light.
Darkness falls and torches are lit.
Guiding me is the key to help me see and feel free.
So let life be and don’t judge me.

By Abigayle

Newborn

It was at your 20 week antenatal scan
They asked to do a more detailed one, if they can.
Shadows in your eyes they started to say.
But they couldn’t be definite or explain
All I knew was you were happy in my tummy
At least 4 times a day your hiccups would be
Due date came and went without much fuss.
You knew we wanted you to wait until after Christmas.
But A whole week your birth delayed
On arrival a bouncing 7lb 4oz you weighed.
So sleepy you barely noticed a thing
As they were poking and prodding .
No red reflex or pupil dilation.
See the eye doctor for more examination.
But my beautiful baby from head to toe
Already how I loved you so
Doesn’t matter to me
If you’re eyes aren’t like most
You’re still my precious boy to boast.
A week later we all went to see the doc
To hear aniridia was expected but cataracts was the shock
Off to Southampton eye unit to see the top man
Still a newborn but he said ‘I can”
At 9 and 10 weeks old you had the cataracts taken out
It was the right thing to do of that there was no doubt.
Yes there will be doctors and eye drop after drop
But just like others the fun in life will never stop
So when you are older and you are thinking why aniridia why me.
Just know that it’s part of you and we love all of you completely.

By Pearl

Rainbows aren’t everything

Iris, they tell me, is the old word for a rainbow.
So we are denied our rainbows. So what?
We can still have them in our imagination.
As for the real world, we can smell a flower,
Sense the presence of a friend
And share a walk with a loving dog like Ava.
We can feel the sunshine warm on our skin,
Taste a dish of food thoughtfully prepared
And listen to music.
After all, rainbows aren’t everything, are they?

By Lynda

 

Doctor Doctor

Doctor doctor in the recovery room.
Shining your torch so soon.
Into my eyes one then the other.
Then he starts to mutter.
But i’m not brain dead.
I’ve just got aniridia instead.

Aniridia, a parents tale.

Proud parents full of excitement and joy
Love abounds for our new baby boy.
Then the world stands still and darkness falls
We held our breath as aniridia calls.
But life carries on and our son’s a delight
He’s strong and brave despite his sight.
He fills our life with love and joy
And love abounds for our grown up boy.

By Lyn

The Shades

The Shades close
Iris is absent each day,
Her absence raises my pressure.
Turn down the light Iris,
Still the pupil refuses.
When Iris is present
The pressure’s controlled.
Iris sort out the light –
It’s so dim in here.
The pupil tries to work-
Hindering movements.
The light will not stop flickering.
Iris steady the light.
Darkness abounds, Iris is gone.
I ask the pupil
What colour is the rainbow?
Iris answers without colour.
Rapid motions of the globe.
I must close the blind
To lower the pressure,
Alas there is darkness
For Iris is gone.
I hear gushing water,
Is there a cataract Iris?
What is blocking the view Iris?
Rapid flickering.
My hearing can’t interpret the sounds.
Pressure rises,
Iris is gone.
Both pupils sigh!
The shades close thrusting
The world into darkness.

By Eleanor

A Special Moment

Across the wide road I could hear the sea
So to the traffic lights for me
While waiting my turn I could see, yes see
A tiny green bike on my right
Yes on the traffic light was a little green bike
It was at just the right heigh to come into my sight
Well it made my day to see that little green bike on the traffic light.

By Gill

Begone Aniridia

Awareness of aniridia we had not
Now networking happy days more we have
Investment sadly we have not
Research and development urgently we crave
In these troubled times of monies not
Dedication of medics volunteers and sufferers so brave
In your hearts and pockets please monies got
Advancing with hope and enthusiasm we rave

And forward we hop
Network ideas, lots to achieve
Inward outward everywhere we bop
Raising funds urgently – talk on the airwave
Into schools colleges and clubs we trot
Deep pockets 2, coffee mornin’s a fav
In flows the monies for R & D to prop
Aniridia – begone – loudly we dream to believe

By Marion

Through my two eyes

From birth to toddler, to many more years.
I wear glasses upon my ears.
Enlarged font to make it clear.
Front of the class to accomplish my work.
Those so grand for always giving a helping hand.
Sunglasses on when it’s sunny and bright to protect my eyes from the beautiful light.
Darkness falls and torches are lit.
Guiding me is the key to help me see and feel free.
So let life be and don’t judge me.

By Abigayle

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