Gaetan’s Story – written by his Mum, Karine

Gaetan was born in Metz (North East of France), December 8th 1991 on a sunny winter day, weighted 3070 kg and mesured 50 cm. A beautiful charming baby.

At age 2 and half, the eye doctor noticed that Gaetan needed glasses for strabismus and myopa.

We saw the eye doctor every year for an annual check up and everything was OK until that day of September 1998. The eye doctor looked at me and said “I see something unusual in Gaetan’s eye, I’d like to check it with more exams”. At that was the begining of Gaetan’s challenge.

At the exams the week after, the doc confirmed an eye problem and started talking about Stargardt. Stargardt ? What kind of a name is that, not the name of a dog surely.

We’ve been sent to Strasbourg’s hospital where they have some of the best eye doctor’s in France specialised in genetics. Gaetan had all kind of exams, angio, ERM and so on ; he has been a very proud little boy during these long two days.

At the end, the specialist told me something like “I can’t confirm Stargardt for the moment, it also looks like cone rod dystrophy and we won’t be able to confirm until a few years”. What can I do then, I asked. “I am afraid nothing but be patient to see the evolution of the disease. The most important is to protect Gaetan’s eyes and come back once a year for a check up” she answered. She was great, she talked to me and Gaetan to explain Stargardt and cone rod dystrophy, she talked openly to Gaetan for I wanted him to know everything as it is his disease, not mine.

His vision was then 5/10 on both eyes (based on a scale of 10/10 best vision). Since then, we go to Strasbourg twice a year and unfortunately, the evolution of the disease got faster than planned.

Last December, the doc confirmed the diagnosis of Stargardt but noticed stains in the left eye and asked us to come back in May to check the evolution (I hear that word EVOLUTION so often in the case of Stargardt that I can now write it upside down without checking my spelling…).

In May, right eye was also infested with stains. What is that ? Not the usual symptoms of Stargardt, maybe a mutation ? We will probably know more in a few days when will go back on September 11th, three years after the start of the challenge. His vison left is now 1/10 (low, isn’t it ?)

Gaetan now wears tinted glasses (he’s got beautiful green/grey eyes underneath them) and has learned to live with the disease.

In his everyday life, Gaetan acts as any other boy, goes to school in a normal school and is a good pupil, a bit overactive but has good results despite his disease.

Thursday 6th September, he will start his last year of our French primary school. He’s been learning braille for 2 years now and is very good at it. We also bought him a video magnifier to allow him to keep on reading normal books and to be able to look at his photo album. With his magnifier, he can now play games and read things without disturbing me every five minutes ; another step to independence. The only thing I don’t let Gaetan do because of Stargardt is to go cycling without me, which is quite a good solution because it allows Gaetan and I to be on our own for a few hours without his father and his young brother.

Gaetan lives with Stargardts, lives as if everything was OK and suddenly realizes that there are things he can’t do like his friends. So what ? Everybody is different, one is white, the other one black, one has no leg, the other has eye problems… We try to teach Gaetan that Stargardts dosen’t mean the end of the world. It is more like a chance for him to become somebody even more special. If he has Stargardts, there is a reason. One of them was to be able to meet the wonderful people of the list 3 years ago and to be the only boy in his school to have so many friends from all around the world.