How amazing is Mehak?

Growing up with nystagmus and albinism, I hated school and social interaction. I was always self-conscious and easily embarrassed that my weak eyesight, poor balance and hypersensitivity to sunlight made me rubbish at activities like sports and hiking. I was, however, always good at academics and especially loved reading. In my early years at school, I enjoyed stories so much that I was usually a reading level ahead of my class. Writing, on the other hand, was much more difficult. My mother recounts how slowly and painstakingly I learned to form each letter and number, giving both her and my teachers a hard time throughout the journey. Then, in about the second or third grade, we began learning how to use computers and I promptly fell in love with technology. I loved typing instead of writing even though it was – and still is – difficult to read the small font on a computer (and now smart phone) screen. I was embarrassed to have to lean close to the screen, but I was also having too much fun to be deterred. As the years passed, I kept getting better at writing and using computers despite my weak eyesight. At college, I finally learned HTML and that led me to start a simple blog and customise it just the way I liked. I went on to pursue a master’s degree in Communication and topped the class. Today, I am a writer and online content creator, leveraging technology to do what I love, despite the challenges. Facing screens all day is often so tiring because my eyes strain easily and I don’t have the best posture while working (in order to see better). But I love what I do and I enjoy learning new technologies all the time. I am currently teaching myself web design and working on setting up my own website. I have been blogging informally for years but have decided to get more professional with it now. I am also working on my first novel and hope to finish it soon. I feel that having nystagmus and albinism has made me a much stronger, resilient and empathetic person. I still get self-conscious and afraid to interact with others, but I am also much more confident than I ever dreamed I could be. I appreciate the fact that every single person faces challenges, but we just have to keep going and work out a way to do whatever it is that we really want to!

How amazing is Rylan?

Rylan’s Mum says:

“My son Rylan was only diagnosed with nystagmus in Reception at school, although I had always noticed his eyes swinging from side to side.
He is just turned six and is the first free reader in his class! We are so proud as we know scanning the words isn’t easy for him and he gets very tired after a while.
He is amazing though!”

We think so, too! Well done, Rylan!

 

How amazing is Alfie?

My son Alfie who is almost 10 has never let anything stand in his way despite now being blind in one eye and having Nystagmus. Alfie persevered in learning how to ride his bike last year and got one for his 9th Birthday. He is going to be sitting the 11+ this September because he is determined to get a place at Grammar School. He has just been on his third skiing holiday and was told by his instructor that he should start training to become a Paralympian!

How amazing is Freya?

I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, because of the way my brain is seeing the words. I was offered support sessions to look at alternative methods of learning. I then went on to university and this year I am graduating! I have studied law for the past three years and in September will be going on to train as a barrister. I anticipate many challenges due to nystagmus such as mock court situations. Reading facial expressions and looking at evidence may be challenging, but nystagmus won’t stop me.

 

 

Please vote for Ben

Ben Haynes is a talented young musician who just happens to have albinism and nystagmus. Ben has entered a music competition and needs your vote. We’ll let Ben explain …

Hi everyone. I’m a self employed musician from Nottingham with Albinism and Nystagmus. I performed a few songs at the Nystagmus Network Open day in Newcastle back in 2015.

I was hoping to ask you all a favour …

So I’m in this competition called Future Sound of Nottingham. I’m one of twelve semi-finalists. The winner gets to play Rock City (iconic venue) and then potentially, Splendour festival. Splendour is one of the biggest events in Nottingham. Here’s a link to the song I submitted.

In fear of sounding like a politician, do I have your vote??

VOTE HERE

You will be asked to provide both your email and mobile number. This is to ensure people don’t vote multiple times.

Once you’ve voted, please share with friends and family. Tagging people on social media is a great way to spread the word.

Thank you for your support X

You could win £450 for the Nystagmus Network

SMALL CHARITY WEEK begins on Monday 18 June. If the Nystagmus Network is your favourite small charity, why not enter the Facebook, Twitter or Instagram competition to help us win £450?

How to enter:

Take a photo of yourself holding up your Small Charity Week poster that reads:

“I love Nystagmus Network because (and say why you love the charity)”.

Then simply post it to either Twitter, Instagram or the Small Charity Week Facebook page, depending which competition you want to take part in. Make sure you include the #ILoveSmallCharities hashtag when you post your photograph.

Thank you for your support in SMALL CHARITY WEEK!

You can download your poster here.