I've raised £30000 to finance treatment and aid for our son Oliver Johnson. He has been diagnosed with LHON (Leber Hereditary Optical Neuropathy). #raisingforolly

Organised by Richard Johnson
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Disability support

Story

Oliver (Olly) was diagnosed with LHON (Leber Hereditary Optical Neuropathy) in November 2021. This condition usually begins in a person's teens or twenties and for unknown reasons, males are affected much more often than females.

Blurring and clouding of vision are usually the first symptoms of LHON. These vision problems may begin in one eye or simultaneously in both eyes; if vision loss starts in one eye, the other eye is usually affected within several weeks or months. Over time, vision in both eyes worsens with a severe loss of sharpness (visual acuity) and color vision. This condition mainly affects central vision, which is needed for detailed tasks such as reading, driving, and recognizing faces. Vision loss results from the death of cells in the nerve that relays visual information from the eyes to the brain (the optic nerve). Although central vision gradually improves in a small percentage of cases, in most cases the vision loss is profound and permanent.

In Olivers case, both eyes are affected. He started treatment in November, but it is expensive and carries only a small percentage of success. We therefore want to raise money to help fund his treatment and any visual aids going forward. Olly is a very active and sporty lad, playing lots of Sports, in particular football for Brinscall Village Junior Football Club. As you can imagine, this condition is affecting that considerably. We will be holding fund raising activities in the coming months - the first of which is detailed below.

06/10/2022 - First and foremost a massive thank you to everybody who has dontated, supported, organised events and raised money on Olly's behalf. You are far too numerous to mention, but we thank you all from the bottom of our hearts. I think I have thanked everybody who has sent messages and donated via this page, but If I haven't I apologise, and please rest assured we are grateful to you.

As for Olly himself, he is continuing with his treatment which at the moment has not improved his vision or halted the deterioration. He now has only peripheral vision in both eyes and is registered as visually impaired. This has meant considerable challenges for him, not least revising for and completing his GCSEs over spring and summer. However, he passed all 9 GCSEs with flying colours. He has therefore started college in Blackburn, studying for a BTEC in Sports Science. He has support personal to assist him whilst onsite and is currently learning to touch type whilst utilising as much technology he can on devices to aid his learning. In terms of sport, his condition has limited what he can currently do, but he has joined a wonderful running community locally and runs 2-3 times a week, assisted by a guide. He is really enjoying this and is setting personal bests every week at a local Park Run. We are also in contact with people in the VI community who are getting us involved in a few blind activities.

Olly will remain on his current treatment for another year and we obviously hope that this will result in some improvement to his vision.

Thank you all once again.

About fundraiser

Richard Johnson
Organiser

Donation summary

Total
£30,154.00