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Colleen's Story

My name is Colleen and I am Amity’s mother. I am writing this story and Amity will be posting hers soon.

Amity first noticed her sight changing in Dec/Jan 05/06. She had a head injury where she banged into a pole, hitting her septum between her top lip and nose. She knocked loose her four front teeth, had a very bloody nose, whiplash and 2 black eyes the next day. One Saturday a few weeks later she was playing piano and her face was about 10cm from the music page. The next Saturday her nose was on the page and she could not read the music. She did a course at University and came home and said she couldn’t see properly. We thought she may need glasses and booked her in to see an optometrist.

The optometrist told us she was malingering and wasting his and our time. She broke down and asked why she couldn’t see. He said she may have a mental illness.

We made a different appointment with another optometrist who tested her and with concern asked her to return the next day for further tests. He referred her to an ophthalmologist. It was in for 4 weeks time.

Amity began her first year of secondary school. She was very confused as she’d left primary school with good sight and having an ease for learning and now she was finding many things difficult; new teachers, new surroundings, new routines, new workload, new friends. She did not realize that her eyes were playing a major part in her difficulty in adjusting and began to believe that she was failing. She could not grasp why she was finding everything difficult. She was struggling to cope with this new environment and her eyesight was rapidly deteriorating. We found many sad, frustrating letters asking for help screwed up around her room.

The ophthalmic appointment finally came. He tested her and then set up appointments for numerous other tests. Amity became very frustrated with herself as still nothing had been said to us and her brain was not helping her to cope with the changes at this stage. We attended testing and then returned to him. He continued to send us for more testing. He said macula, then optic nerve, then macula and back to optic nerve. I asked what her measurements were he said 6/60 and 6/15. I asked if he could write to the school to inform them she had low vision. I approached the school nurse and she links us up with the Association for the Blind and they provide a monoscope and magnifier.

This was 12 weeks after she had begun her first year at high school. The school enlarged her text books and all of her school work. We were still none the wiser.

We then attended 3 hours of testing and an MRI. From these tests the ophthalmologist said her optic nerve was damaged and to come back in 6 months. It is now June and we are really none the wiser. I ask for a written report so I can try and work out what we are dealing with. Each test just showed her eyes getting worse. The eyes are now 6/60 and 6/48. He and we do not know what we are dealing with. July I felt like I was having a breakdown from lack of knowledge and lack of knowing where to go next. I asked around about other ophthalmologists and heard more horror stories. No-one could recommend a person with a compassionate nature and able to relate well to children or even adults for that matter.

Our saviour was, a Behavioural optometrist we had been introduced to in March and she saw us regularly between the many tests and appointments and would explain what was happening and monitor Amity’s eyes. In September she picked up an abnormality in the macula she had not seen before. She arranged for us to have photos taken of the macula. With the presence of drusen we were referred to another ophthalmologist for confirmation of Stargardts. It is now November. The ophthalmologist tells us she’ll have lost all central vision by Christmas. (6 weeks away) He told us to hold up two fists over each eye. This is the vision she would have.

Shock sets in. After a night of not sleeping, Amity comes to us at 5am and says ‘I am so happy!’ My husband and I are stunned. We ask her to explain and she says she feels so relieved that she finally knows what she has and can prove that she is not making it up. No more meaningless tests. We ask how she feels about losing her sight and she replies,” I’ll handle it!”

The night we returned from the diagnosis, I was on the internet and found the Fighting Blindness site. This became our beginning for information and support. I read about ECHO drops and contacted Dr Nolan. He hears about our case and urges us to fly to the USA immediately. I book tickets for my husband and daughter. I contact people over here to see if there are ECHO drops available. We find one bottle in Sydney. We need a prescription. No-one will write one as the study has not been peer reviewed. We are offered no hope, ophthalmologists tell us there is nothing to do, they say the drops are virtually homeopathic and will probably not do anything and because of such a low dilution will not have any problematic side effects. They say they don’t want to give us false hope. BUT we are willing to try. Our local GP is willing to support us and we have the bottle flown over. We cancel our tickets to the USA and we begin administering the ECHO drops. It’s December.

I wrote a letter of complaint to the original ophthalmologist and he asked us to visit him and discuss Amity’s case. He still said it was optic nerve. We showed him the Stargardts diagnosis and said we believed he had misdiagnosed. He advised us to fly across the country to Melbourne to get another opinion. I stated that he had spent 6 months with no confirmed diagnosis and we did not want our child to miss so much schooling. My husband suggested he send his notes across and if the Specialist wanted to then see us we would fly over. 4 weeks later the ophthalmologist rings and says he has misdiagnosed. We get no written report or no apology. Our daughter passed on to him a message stating that he needs to improve his skills when dealing with children and maybe find some empathy. This same week we also receive a letter of apology from the very first optometrist stating his ego got in the way of correctly responding to our daughter’s condition and admitting he was out of line suggesting she had a mental illness.

January, we have our monthly check with an optometrist who is willing to do thorough testing and photographs to monitor Amity’s eyes. (A requirement of the TGA and support for us).They seem to have stabilized. February results show improvement and March and April and May. Her measurements have gone from 6/60 and 6/48 to 6/24. Her close up vision is 6/19 and 6/15 and is remaining stable. Her colour vision has improved and the contrast tests are showing improvement. Amity is doing things that she had stopped last year. Her results are showing long vision and near vision improvement. We are thankful. We continue to monitor her progress daily and live each day as it comes. Amity is adjusting to her low vision and she can adapt faster now to when her eyes let her down. She has great coping strategies most of the time. She still has not accepted that she may never be able to drive, but what teenager would. She is happy, has great friends and always gives her best.

We are blessed by the supportive people who are willing to support us and lend a hand when needed. The emotion of the past year has lifted.

I met a lady with a guide dog at a workshop recently and she was an inspiration. She made me aware that my child will receive support whilst at school but she has enlightened me to the hurdles she and we will have to jump when our daughter enters the workforce. Hopefully people will be less ignorant and more supportive as the world matures. We will leap the hurdles as we encounter them.


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