This page is set up to raise some funds for a friend of mine who’s son has very quickly lost his sight without any prior illness or warning. His father serves our country and has had to leave deployment as things are getting tough at home.

Deacon is a beautiful young man and at the young age of 17 has had to pull out of a stage performance of shrek as you can imagine he is heartbroken,

his mum is trying to hold down a job and look after the siblings whilst taking deacon to much needed appointments.

I think this may just lighten the burden a little

We were out in town one day, he was looking for a present for his little brother’s birthday, and he rubbed his eye. As soon as that had happened, he turned to me and said there was something wrong with his vision. He could see a black spot suddenly in his right eye. Over a few days, this gradually led to blurred vision in that eye. I made an optician appointment but could only get one 2 weeks later. Over that time, his vision got worse and worse in that eye.

We went to the optician and they couldn’t find a reason for the black spot (which had grown in size) or for the blurring in that eye, so they sent us straight to opthamology at the hospital with a referral letter. They checked him for retinal detachment, a displaced lens, and other injuries, but there was no signs of trauma to the eye at all.

They then decided it could be optic neuritis. However, that’s usually painful and he was having no pain.

They have been bringing him back every week since then to test his vision. He’s had two normal MRIs, which may have ruled out MS, but that doesn’t always present with brain lesions. He’s had a fluorescein angiogram too, as well as blood tests for a range of things from Lyme disease to TB. Everything so far has come back negative. However, the sight in his eye has gotten progressively worse. Last Thursday, on Evelyn’s birthday, he realised at his appointment that he can no longer see clearly through his left eye.

They had already trialled him with steroids, but they opted to put him on a lower dose for 8 weeks to see if it helped. They don’t seem to be making a difference.

He’s now on the urgent pathway, and will be seen by a professor of neuro ophthalmology in Cambridge.

They say it may still be an autoimmune disease, but they aren’t sure which type. They have also highlighted the possibility of an inherited genetic condition called Leber’s Hereditary Optic Neuropathy. It begins with sudden sight loss that gets worse over a 12 month period until the sufferer is registered blind. Glasses don’t help, there is no medication, and no possible surgery. Not a lot is known about it. 95% of people inherit it from their mother (although it’s not in my family) and the other 5% are just unlucky and have a genetic mutation occur in the womb.

If it is LHON, he will go blind, and there’s little we can do. If it’s been passed from me, Bowen and Samson will have a 50% chance of also inheriting it. If they do, they will have around an 80% chance of also losing their sight.

Right now, we don’t know what it is, and the doctors seem flummoxed. They’re going to do a plasma exchange next week as that can help autoimmune conditions, and they’re also doing a lumbar puncture, which can help diagnose them. If the plasma exchange works, we are looking at something autoimmune. If it fails to have any effect, Leber’s is the most likely option, and we will need genetic testing.