Month: June 2016

A successful open garden event!

Garden lovers had a rare opportunity this weekend to visit the picturesque gardens of a Wiltshire country estate and help people affected by nystagmus.

On Sunday 12th June Fonthill House, near Tisbury, was opened to the public from 12 – 5pm with proceeds from the event going to the Nystagmus Network. The gardens themselves cover approximately 12 acres, comprising both formal gardens and also an extensive woodland garden, which have been redesigned and redeveloped since 2006.

Lord Margadale currently opens the gardens only three times a year for various good causes and decided to open them for the Nystagmus Network because one of his workers (James Kirk) has a young son with nystagmus. Debbie Kirk, wife to James and mum to Ryan, helped organise the event. She was delighted that it was a success and raised over £2,000 for the Nystagmus Network.

We would like to say a big thank you to James, Debbie and Ryan for holding such a successful event! The money they raised will make a big difference to all the work we are doing supporting the nystagmus community and the new projects we have planned. If you would like to hold an event or make a donation to the charity please get in touch with us or visit our Justgiving page here.

Meet Lucie!

Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an active and interesting life is paramount to me and I can assure you that my childhood was never boring!

At the minute I’m working as an apprentice at a riding school and training for equine qualifications. I’ve passed a fair few already. I have my own horse called Heidi whom I adore. We compete in affiliated show jumping regularly. In the past I’ve also enjoyed skiing, trampolining, golf and rock climbing. I’m also really into running, especially long distance, and I’m hoping to run the London Marathon to raise money for the Nystagmus Network next year.

Like many people with nystagmus, I struggled at school. Asking the teachers to write in a dark pen on the whiteboard and enlarge worksheets was always awkward, but, if you can manage to pluck up the courage, it will be easier next time.

PE was difficult, especially ball games. I used to get hit on the head a lot by the ball because I didn’t see it coming. So we invested in a rugby hat and a gum guard. I suppose I looked a little odd, but I didn’t have to sit out in PE, which I would have hated, so it was good with me! I have some difficulties when I’m jumping or doing dressage twist. I have to remember patterns and sequences and the colours of the jumps so that I know where I am.

When I was learning to play the piano, rather than reading the music, it was easier if my piano teacher played me sections of a piece and I copied them back. When my friends and I go out clubbing, I always make sure I’m attached to someone so we don’t get separated. My friends are all amazing and understand. We went to a club once that had a lot of smoke and strobe lighting that made it difficult to see, but we all just held hands and danced like that so we didn’t get lost! I think my main message is that you can do whatever you want to do and you will find a way around it to make it work.