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LIVING WITH STARGARDTS DISEASE
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 Stargardt, 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 Stargardt 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 Stargardt, 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.
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