It has been a rocky few weeks in the Weston family.
Just before Matthew’s exams at the end of April, he was hit on the head with a ball while playing dodge ball at school. A couple of days later he mentioned he had blurry vision in his left eye. Terry took him to the doctors. She thought his sight would improve with time. Matthew continued with his exams.
The day after his last exam Matthew mentioned again his blurry vision, so I made an appointment at the options for the following day – Sunday 25th May. Matthew and I went to the opticians, When she had finished her examination she organised for Matthew to be been seen by a doctor at the Princess Alexandra Eye Pavilion (PAEP) straight away. Matthew and I went to PAEP straight away and were joined by Terry and Eleanor who had been at the art college graduate show. More eye tests were done. The doctor called the consultant to examine Matthew. He then gave us the news that Matthew had irreparable nerve damage in his left eye and his right eye looked like it was lazy but may pick up the slack. Blood was taken and an appointment made to see another consultant mid-June. We all went home in shock.
Terry took a few days off to spend with Matthew and for the news to sink in. I went back to work as I thought this was the best way to cope.
On Tuesday 27th May, Terry took Matthew for a CT scan. Then on Wednesday 28th May we went to see our GP. After speaking to the GP Matthew went back to the opticians and got glasses for distance and reading.
On Friday 30th May Matthew and Terry went to PAEP for a field of vision test. They were then told that the consultant assigned to the case wanted to see Matthew. They had to wait around until he came out of surgery. Matthew was then passed onto another consultant who arranged for a MRI scan to done that day. They were to go over to the Western General then go back to PAEP. The doctors now suspected it might be a vitamin deficiency.
They went back to the PAEP after the MRI scan, only delayed by me head butting the pavement – by tripping over – and having to visit the minor injuries clinic at the Western General myself. The plan of action was Matthew was to be given a steroid drip every evening over the weekend and each morning to return to have his eyes checked. This meant Matthew had to miss rehearsals for connections and wasn’t able to take part in the show the following week.
Matthew duly went in and out of PAEP all weekend. On Monday 2nd June Terry, Matthew and I went to see the consultant at PAEP. The steroids had not made any difference and it was back to square one. An appointment was made for Matthew to see the consultant again on Friday morning.
Matthew was still on exam leave but was due back at school on Monday 9th June. The school had been informed of the situation. Terry arranged for them to see the head of support for learning at Matthew’s school. The meeting went well with the agreement that Matthew would get a notebook to help and would not need to go to PE.
On Friday 6th June Terry, Matthew and I went to see the consultant at PAEP. All the results so far had come back normal including CT and MRI scans. They were just waiting on genetic test results. Matthew was given tablets and an appointment was made for him to return in two weeks’ time.
Over that weekend I did some research into my family. I remembered that a cousin of my mum’s had a son who lost his sight so I started to try and find relatives that I could contact. I found two of his sisters and wrote to them. One of the sisters phoned me the day she got the letter. It turned out that when her son was 15 he had a similar experience to Matthew. They discovered it was caused by a genetic disorder called Leber’s Hereditary Optic Neuropathy (LHON) which is passed via the mother. It affects males mainly. The relatives I had contacted were from the maternal line. With my second cousin and I sharing the same great grandmother.
Friday 20th June Terry and Matthew went back to PAEP for field test and to see the consultant. Terry was able to share the news of the history of LHON in the family. Although we still await confirmation of this the consultant suspects this to be the cause of Matthew’s sudden reduction in his eye sight. This came as a blow to Matthew who I think was still hoping that it would only be temporary. The consultant started the process of registering Matthew as partially sighted and organised for them to speak to someone from RNIB about this. Although at the time they both wanted just to go home they spoke to Emma from RNIB who talked them through things.
Matthew has been back at school and drama, though he didn’t feel able to take part in NYCoS concert in June. He is taking part on Summer on Stage at the Lyceum and looking forward to our trip to O2 to see Monty Python.
The rest of us are carrying on, supporting Matthew where we can. The school have been excellent getting support in place before the end of term.
I have wrote this blog post to share our experiences and as a way of me coming to terms with what has happened so far. I’ll update the blog with further adventures during the summer.
If you read this post and think how can I help – keep us in your thoughts and prayers, if you can donated to RNIB.
The biggest positive from this experience is that it has made our small family unit of Terry, Matthew, Eleanor and I stronger.