Thank you to everyone who commented on my facebook page when I posted about Matthew last month.
We were at the hospital on Friday (1st August) and have finally got a diagnosis for Matthew. He has Leber’s Hereditary Optic Neuropathy (LHON). This is a genetic disease which occurs mainly in males where there is a sudden loss of sight. He is not blind. He still has some sight. He is able to get around especially in places he is familiar with. He has trouble reading. The consultant has put him on tablets and eye drops to help stablise his vision. The forms have been signed for Matthew to be registered as partially sighted.
We are all still coming to terms with the situation especially Matthew. I am writing this post for information. We are not looking for sympathy just understanding that things are different with us.
Today Matthew got his National 5 results. He got 3 As – English, Drama and Music – 2 Bs – Maths and Italian – 2 Cs – Computer Science and History and 1 D – Physics. Well done Matthew! We are all pleased with your results!
The next step is we all continue to adjust. Matthew is going back to school next week. He plans to take 4 highers – English, Drama, Music and Maths.
Although some doors may have closed plenty more have opened to Matthew and the rest of us.
Thank you for reading this post.
Adventures of The Weston Family 
Hello! My son was affected by LHON about 6 years ago. Since then I’ve been working to raise awareness of LHON, support for LHON families, and funding for research.
Have you encountered Dr. Patrick Yu-Wai-Man, one of the world leaders in LHON research? He spoke at our LHON Conference last June; here’s a link to his video:
I created a website called http://www.LHON.org, and you can register and get on a LHON mailing list.
There’s a very large LHON Facebook group at:
https://www.facebook.com/groups/29805437752/
There’s also a group more focused in the UK at:
https://www.facebook.com/groups/LHON.Society/
My son’s journey to a diagnosis was similar to your son’s. His story’s been told on several TV shows and videos that can be seen on his website at JeremyPoincenot.com
Happy to help in any way I can!
Hi Lissa thank you for your comment. As a family we are coming to terms to the changes. It is good to hear from other families who have gone through similiar experience. Anne-Marie