Last Thursday I went to a volunteering event where I saw my AM Dawn Bowden and I told her about the issue with exam paper not being on coloured paper for people with Irlen syndrome, who are doing national test, It was a surprise when she said that the Welsh Assembly will be looking this issue and what can be done.
I am so pleased about the fact that the Welsh Assembly are looking into this issue all thank you to Dawn Bowden.
It great to have the Welsh Assembly taken Irlen syndrome seriously .
It started back last year when I had a met with Gerald Jones about the issues we are facing daily, basic then we decided to set up an action plan to taken my campaign forward we had to wait for a new AM which turn out to be Dawn Bowden so we had a meeting where Dawn say that we hold an awareness event during a very special week.
This year even more meeting with my councillors to start working on my wish list.
As an ambassador, it is an honour to meet important people on behalf of people with Irlen syndrome and make them understand Irlen syndrome is a seriously condition and the impact is massively .
We ‘ve all heard of autism and cancer while there is still much to learn about and many lives are affected or lost by it, there are lots of charities to these people and their families and lots of money go into them, but I wish the same could be said for Irlen syndrome.
Unfortunately, professionals don’t understand what Irlen syndrome is or the needs of those with the condition so we need them to be looking at the big picture and started listening to us when we say that Irlen syndrome is nothing to do with the eyes but our brains
With the general election, it time to make the candidates aware of Irlen syndrome.
I am looking forward working with Rhonda Braithwaite and Lee Davis over next few years get Irlen syndrome out there .
When I found out that I had Irlen syndrome back in 2012, It was a rollercoaster of a journey which made worse by not knowing what Irlen syndrome was or having support, but only for me whole family and being told that I was a freak or stupid and that I had to wear blue tinted sunglasses, I went through a grieve progress of denial, anger, bargaining depression why me but we were told that Irlen filter would £500 but in 2013 It was worst year of my life my symptoms got worse.
Until I joined an online support and found some true heroes they funded my Irlen lenses then I finally accept having Irlen syndrome and learned that I didn’t need to be wearing blue tinted sunglasses and that didn’t cost £500 after all, I was totally shocked by the fact that no one had hear of Irlen syndrome so I decided to be brave started share my experiences with the condition.
It took a while to bring Irlen syndrome to the attention of AMs and MPs but finally I did it last year by going down Welsh Assembly where I come face to face with the person who first diagnosed me with Irlen syndrome I feel really scared about meeting her again but thanks to the work I have done on my past that I could enjoyed our day down the welsh Assembly.
Then this year I got Irlen syndrome up to Parliament for another event to raise the profile of the condition and educating MPs this time . I have learned to accept every part about my condition and manged it so yes I can be hard to accept a condition .
Remember everyone is different in own way so I have come overcame barrior to being brave and help other people with the condition now so I enjoy writing my blog now.
So Yes what I went through when I found out I had Irlen syndrome but now I am sharing my experience with people.
A another day that will go down in Irlen history ,which is an achievement and it one that all involved will never forget it ,It was a huge opportunity for us .
On Tuesday we went to the House of parliament for our event which hosted by my MP’S Gerald Jones for Merthyr and Rhymney we went though Cromwell gate and security then we went into our room.
where me and my friend Hannah given our speeches about living with Irlen syndrome and experiences we meet Stephen Doughty for Penarth and Carolyn Harris for Swansea
Photo credit by Up and Coming .
we would like Thank -you Gerald Jones MP’s for hosted our event and being our shining star alongside Dawn Bowden AM and I would like Thank-you Up and coming for taken photos of Our day .
March is a busy month for me and I have putting together some of the things I have done has Irlen ambassador , They have been some huge opportunity like going to Parliament on Tuesday.
I have manged to get my local authority to change the ballot papers from black text on a white background to black text onto cream paper with some help from counclier Mike O Neil .
I also given my speech to my local Rotary club, which went down a storm and members found it very interesting . It was an honour to given it to them
With only two days before our day in Parliament which is amazing to even be going to Parliament to educating MP’s about Irlen syndrome and the issues we are facing on a daily basic ,I will be advocacy again for people with Irlen syndrome
My campaign is really starting to taken off now this year which I am delighted about and with my hard work one day People with Irlen syndrome will have equality and respect .
When I decided to set up my own campaign called the voice for people with Irlen syndrome, I never imagined that it would be the starter of something special for people with Irlen syndrome, it is a great honour to take on the fight for everyone with Irlen syndrome and taking our concerns to my AM Dawn Bowden and Gerald Jones MP.
It is so amazing how much support I have gain for my campaign because every person with Irlen syndrome deserves a chance at a better life and educational, social.
The Welsh Assembly hold a special place in my heart because it where I give first big speech about living with Irlen syndrome and the issues we are facing
I am so fortunate have lot of support for my campaign ,It’s finally a year old now which is amazing now.