True vision
Damian Pachciarz, 34, from Sutton, never imagined a routine trip to the optician would change his son’s life forever…
Peeking my head into the living room, my little boy was engrossed in his Playstation. ‘Come on, we’re going to be late,’ I said.
It was October 2018, and Adam, then five, was due for an eye exam at the optician.
But when Adam was on his Playstation, there was no tearing him away.
After a few minutes, he reluctantly put his coat on, ready to go.
‘We’ll see you later,’ I said to my wife Justyna, 39.
Half an hour later, Adam was sat in chair, reading letters off a chart on the wall in front of him.
‘He’s struggling to read the bottom line,’ the optician told me afterwards, prescribing Adam a pair of glasses.
He wore them for three months, but when I took him back to the optician in January 2019, he still struggled to read the bottom line of letters.
He was referred to an ophthalmologist at St Helier’s Hospital, but even then, I didn’t think it was anything serious.
But after an examination, the doctor
had some news.
‘Adam has retinal dystrophy,’ he said.
It was a condition that would cause his vision to deteriorate.
‘What do we do?’ I asked, worried.
Sadly, there was no treatment. My boy is going
blind?! I thought. Justyna was absolutely devastated when I told her the news back home.
Adam would progressively lose his central vision, and there was nothing anyone could do about it.
Retinal dystrophy covered a wide range of different conditions, so in June, we were referred to London’s Great Ormond Street Hospital for further tests.
‘I’m afraid Adam has Stargardt disease,’ a consultant told us afterwards.
It was a genetic condition that caused progressive damage to the macula, the small area in the centre of the retina that was responsible for sharp, straight-ahead vision.
In that moment, our whole world changed, and Justyna and I burst into tears.
Researching the condition back home, we realised that over time, Adam’s central vision would disappear.
While he wouldn’t be completely blind – he’d still have his peripheral vision – eventually he wouldn’t be able to read books, watch TV, or see faces.
We both felt so angry that we couldn’t do anything to help our little boy.
Sitting Adam down to tell him the news was heartbreaking.
‘Your eyesight is going to get worse,’ I started.
I’d also found pictures online that people with the condition had created, showing the world how they saw it – pictures of landmarks or pretty scenery would be blurry in the middle with a few blind spots.
‘This is what you’ll see,’ we told Adam, our hearts breaking in two.
But Adam took it in his stride and showed such bravery. Since then, we try to stay positive about it. Adam can still have a life – he won’t be able to do certain jobs or drive a car, but he can still live life to the fullest. Now seven, he’s the kindest, most optimistic little boy.
He’s at the hospital every six months, and last time, his eyesight had deteriorated slightly. We’re told that it will really start to change when he’s about 12. For now, he still goes to school, rides his bike, plays football, and spends hours on the Playstation. These are all things that one day, he won’t be able to do.
I’m going to be running the London Marathon this October to raise money for the charity Fight for Sight. One in 10,000 people have Stargardt disease, and I want to help fund research into finding a cure.
We pray every day for a breakthrough in the research, and hopefully one day, a cure for Adam’s condition.
For now, our boy is making the most of the beautiful world around him, and we will be there for him, no matter what.
To make a donation, visit www.justgiving.com and search for Fightforadamssight.
Was he going blind?