What is Stargardts 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 thats what we thought). At that appointment Rose wasnt 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, Roses eyesight has deteriorated and she no longer has central vision.

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. We have highlighted a few challenges below

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. Rose will NEVER be able to drive.

Not being able to read a timetable for a bus or train or even locate an exit sign with ease

Education too is a challenge - With all school work and exams being adapted, as Rose is unable to read the white board and writing is tricky therefore her work needs to be a minimum enlarged to font size 20 +, clear and in BOLD

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 £70,000 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

- Terri Jayne Theatre Arts £5800 + to date

- China House girls £2800+

Other events held including Grans Afternoon Tea / Royal park 1/2 marathon / Cake sales / Halloween Displays / Midi Mudders / Jumble sales / Race Night / Car Wash / Disco / Bag Packaging /Quiz Night/2.6 challenge

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 16 years, approaching adulthood she still manages 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 Roses 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 see