Running for a noble cause

Katty Newitt,
Retinitis Pigmentosa patient and founder of Foresight

I grew up in Kent, a small county in the UK and went to Betteshanger School. I always had night blindness but thought everyone else did too.

At school I sat at the back of the classroom and couldn’t see clearly what was written on the board.

Come to think of it I don’t even know if my condition affected my studies because I always had this problem.

I left schooling at 16 and headed for France to learn French. I gave up my studies not because it was difficult for me but I always knew what I wanted to do in life.

After my short stay in France I returned to my home country and took up cookery classes in London; here I mastered traditional English cuisine.

I also learnt to drive and had a few nerve-wracking experiences when dusk fell.

I recall on my way back from a party I drove right over the central road divider and ruined one of my tyres. Luckily there was less traffic and no one was hurt but the accident shook me up.

As my eyesight deteriorated ...
... I knew something was wrong. At 20, I was finally diagnosed as having Retinitis Pigmentosa (RP) at Moorfield Eye Hospital, London.

I was told my vision would deteriorate probably leading to severe tunnel vision followed by total blindness.

RP is a degenerative disease of the retina that causes night blindness, tunnel vision and colour blindness, leading in most cases to complete blindness.

People from every corner of the world and from all walks of life are robbed of their sight by RP.

Its onset varies with each individual. It can affect babies and children as well as young adults.

For some the loss of sight is gradual whereas others have periods of rapid loss, often with years in between, with no apparent decline.

My condition deteriorated slowly in my late teens; friends and family didn’t know what was wrong. They assumed I was being unusually clumsy.

Living with a disability can be hard for the other members of the family too. The family that is always tense and overprotective can demoralise the sufferer.

I tried to be open about my condition – explained how much I could do without assistance and where and when help would be appreciated.

The first and hardest step towards living positively with a disability is accepting it.

When I was diagnosed there was ...
... no hope and no cure but recent advances in medical research mean a cure is now probable. With more funds for research this could be achieved within 5-10 years.

Knowing only too well what the condition does to you, I wanted to help in whatever little way I could.

I phoned the British Retinitis Pigmentosa Society in England last July to find out about raising some money for them. They assured me a cure might be possible.

I went on to contact Retina International, which funds research programmes throughout the world.

I had achieved other sporting challenges to raise money for an RP charity in the past.

I was part of the British Team in a blind sailing regatta in Auckland, New Zealand – my team won a gold medal.

I was also the first woman to run up the British Telecom tower in London (accompanied by boxer Duke McKenzie in 1985).

I came to Dubai nine years ago. The condition was not as bad then. It has worsened significantly over the past three years. Now I can detect forms in my central vision only.

I cannot differentiate colour (except bright orange, which has become Foresight’s symbol) and am totally blind at night.

Yet I refuse to let RP and visual impairment define me. My friends and I brainstormed on ways to work towards the cause.

In September last year ...
... we set up Foresight, a voluntary organisation to raise funds to find a cure for Retinitis Pigmentosa.

Bright orange, the only colour that I can distinguish, became Foresight’s symbol.

Foresight has grown to a highly organised body with a core team of 10 and a raft of other volunteers.

Though the group is still in its infancy we have already received a phenomenal amount of support.

Over the past five months we’ve received donations from the corporate world and benefited from an Expat Women Ball’s raffle proceeds.

Some of the money came from selling cakes and jewellery. Our aim is to contribute to the progress of research through an initiative such as a screening unit in the UAE.

I met Nicola Wilson three years ago ...
... at the Dubai English Speaking School – where our children are studying. We met often and soon became good friends.

I told her I wanted to get fit through running but couldn’t because I needed a guide to run with. She offered to accompany me and soon we were running together.

When we realised we were good as a team we started talking about aiming for a goal. Since we are both from the UK we decided on the London Marathon to be held on April 17.

We started training by running around Safa Park. It was ideal because of the flat surface and measurable distance.

 However, we had problems when I developed very painful calves and had to stop running.

The problem was diagnosed as shin splints caused by my putting down my feet too heavily to compensate for my inability to see where I was going.

After following the advice of a podiatrist and a physiotherapist I am now back on form and we have resumed our training.

Wilson is a key member of the Foresight team and is indispensable for me to run the marathon.

She processes every bit of visual information and communicates it to me. Our determination and sense of humour keeps us going.

It is going to be a tough run but it is refreshing to know I have a friend with me and every dirham raised could bring a cure for those living with RP.

I live a normal family life ...
... with a few modifications; I have a chauffeur and use a reading machine (which magnifies text).

I love to cook – in fact I teach my friend’s children how to bake and ride horses – and am learning to sail a dinghy.

I knew Edward, my husband, from a young age. His mother taught me to ride horses.

You can say that is when the friendship grew. He was fully aware of my condition and its future effects when we got married.

My sight had already begun to deteriorate then. We have been blessed with three children: Thomas (9), Charlie (7) and Emily (5).

 I support my children in all their activities. They on the other hand make sure they are outside my range of vision if they are doing something naughty!

RP is a hereditary condition and a faulty gene which causes it can be passed on in different ways.

I am lucky that my form of inheritance means my children will not have RP – with other forms many or all the children of a sufferer may inherit RP.

It is a progressive disorder and the needs of a person with it varies from time to time.

It is often difficult for members of the family to understand that something which was helpful five years ago may be of little use today.

Some people may feel too embarrassed to tell others about their