Saturday, August 21, 2010

Seriously relieved

I am going to get very serious today. I have had a some very good news this week....well not me, my 24 year old son, but it has been something thats has stressed us as a family for over a year and although not over yet, there is finally light at the end of the tunnel.

It started with an accident. My son was driving on the motoway with his window open. Something none of us think twice about, but a stone came through the window, probably thrown up by a lorry on the other carriageway and hit him in his eye. He was lucky as it struck with such force that he nearly crashed but just managed to control the car long enough to pull over. I have to admit by the time I saw him he was calm and had a small scratch mark on his eyelid and so we didn't fully take in the seriousness of what had happened. We were just pleased he seemed to have escaped unscathed. But a couple of days later he said his eye seemed blurred. He went to the eye hospital, but by the time he got there, he had just about lost all the sight in his right eye. They were reassuring, and said that it was just bruised and the sight should come back, but it didn't and 6 months later they were starting to get worried, tests showed no signal was getting from the brain to the eye and we suspected the optic nerve was dying. They decided that it must be something more than the accident causing it and started doing genetic testing for LHON ( Lebers Hereditary Optic neuropathy).
This is a dreadful disease that comes through the mothers side of the family. Young men between 18 and 30 are mostly affected. One eye will suddenly go blind and in ALL cases within 2 years the second will follow, no cure just complete sudden blindness. As it goes through the mothers side of the family it could also have meant that his sisters and any future children they had , could be affected. It is extremely rare and Genetic testing for it takes a long time, The first tests were unsuccessful ( not sure what that meant) but after 6 months of waiting we had to go through it all over again. Initially we were having to drive him to and from work as he
couldn't drive. He was no longer allowed on the shop floor at work so was office bound, and although he knew once he had adapted well enough he could start driving again ( yes it is perfectly legal to drive with one eye), he would never be able to ride his beloved motor bike again. So he had to sell his new pride and joy.
Then my son realised his other eye was getting blurry, so he had to start wearing contacts and glasses and he has to be tested regularly to see if he can continue to drive. Thats when real panic set in , every phone call from him, I worried would be him ringing to tell us he had gone blind or the hospital to confirm that he had LHON's. We started to put our life on hold to be able to be there if anything happened.

But that hasn't stopped him. Now nearly 18 months later, he is back, driving, working on the shop floor and he has left home and become very independent.
And best of all this week he went to the hospital. The great news is that he is negative for Lebers.... Phew, I can't tell you what a relief that is for all of us. His good eye is only strained by the changes in is bad eye which to everyones surprise is getting better. But to top it off, he realised in the tests he could see more than he had noticed before. The improvement, although he can't really register it yet, is massive. His doctors are now anticipating that he will regain full sight within 4-5 years.

I never now drive with my car window fully open unless I have glasses on. I have also come to realise how precious our eye sight is, and for those than do have Lebers I feel great sympathy. But I have also read enough to know that some young people cope with these terrible circumstances and live full and active lives. I am so very proud of how my son has coped and dealt with such a heavy burden and I hope no one else has to go though what he has but if they do, please know that there is always hope.


  1. I'm really happy for you and your son that the news is good - I can't imagine how much of a relief that must be - and now knowing you can move on and recover :)

  2. That really is wonderful news. It's true how we take some things for granted. Hope your son makes a full recovery soon. Vic x

  3. That is wonderful news! I can't imagine how worried you have all been and am so glad that your son's sight is improving.