What is Stargardt’s Disease?

Stargardt Disease is an inherited eye disease. It affects the macula, a part of the retina at the back of the eye which gives us central vision and the ability to see detail.

Your parents / grandparent may relate to this as it is similar to Age Related Macular Disease.

Our Story

Back in July 2011 our daughter Rose, age 7, mentioned she couldn't see the whiteboard at school. No alarms rang as Rose was a typical fun loving 7 year old doing everything that 7 year olds do. But, when helping out at school, I noticed she was holding her book closer than her peers so I took her for a routine eye appointment (or that’s what we thought). At that appointment Rose wasn’t able to read any of the letters on the eye chart and was asked to come back another day to do a further test. We spent 6 weeks going back and forth to London Great Ormond Street & Moorfields to get the diagnosis of Stargardts.

Since that final diagnosis, Rose’s eyesight has deteriorated and she no longer has central vision.

What is the impact for Rose

Examples of the challenges which currently and will further impact Rose:

- Unable to recognise faces from a distance - eg friends across the street

- Writing must be enlarged, clear and BOLD - FONT 20

- Cannot read signs in the distance eg, exit signs, bus numbers, bus & train timetables etc

School work has to be adapted - unable to read the whiteboard

- Will NEVER be able to drive

What is the Future

At present there is no cure, and as she gets older, many things, but especially mobility, will become tricky when she is on her own. Things we take for granted will become more of a challenge.

Imagine being in a town centre and not being able to read a sign from a distance, or find your way to the toilet easily, or be able to drive to get to work.

We do hold onto the hope that one day there will be a cure.

We joined forces with Fight for Sight back in December 2011 - since then we have been supported by family, friends & the local community where we are all trying to create a future that everyone can see

To date we have all raised over £60,000 and we have highlighted some of the fantastic events we have held and been supported by so many wonderful generous friends and relatives.

- April 2013 - Mark - Brighton Marathon raising over £25,000

- Collection Tins to date from our local BP garage £2800.00

- Meetingsclub Charity Ball March 2017 £6500.00

- China House girls £1400 +

- Terri Jayne Theatre Arts £5000 + to date

Other events held including Gran’s Afternoon Tea / Royal park 1/2 marathon / Cake sales / Halloween Displays / Midi Mudders / Jumble sales / Race Night / Car Wash / Disco / Bag Packaging /Quiz Night

Now For The Good News

This is not a negative story. Whilst certain some things are a little tricky, Rose is Rose, a fun loving young lady of 14 years, still managing to do the things that all her friends and peers can do. Rose still participates in all activities, skiing & dancing (her love) This is down to Rose’s determination and the love and support she is surrounded with which extends far beyond her family

We hope this helps you understand why fundraising is so important to us and why we are totally committed to supporting Fight for Sight, the leading UK charity funding research into Eye Disease whose aim is to help create a future that everyone can see.