Sight Saving Surgery for Connor

Connor was diagnosed at 3 years old with a chronic eye disease called uveitis.  It showed up one day as a red looking right eye that didn't seem to worry Connor much but a week later we began what was going to become regular trips to medical appointments.  
Connor's condition is caused by his immune system attacking his eyes and causing inflammation of the mechanics inside his eyes.  It took over 4 years to get this inflammation under control and during this time many side effects of the condition and the treatment caused his vision to deteriorate.  
One of those side effects was a cataract in his right eye.  So for the next couple of years as well as continuous visits to Opthalmology, Pediatric  and Rheumatology appointments, Connor had to wear a patch over his left eye to make his brain continue to use his right eye, which it didn't want to use as the vision was very poor.  This was very difficult as you can imagine for a pre school kid who just wanted to be playing with his sister and friends unimpaired.  
In June 2008 the cataract surgery was performed , his affected lens was removed and an intraocular lens was inserted into his eye.  The hope was that his vision would be restored as long as we could keep the inflammation at bay.  Unfortunately six months after the cataract surgery a nasty infection called keratitis appeared on the right eye.  This meant an emergency trip in an air ambulance to Westmead Childrens Hospital where we spent the next 3 weeks working hard to save his eye.  He had a few days with drops going in his eye every 20 minutes and after that every couple of hours.  He started Kindergarten in the hospital school.  He also developed a cataract in his left eye!
By 2010 the keratitis was healed but the vision was gone and the left eye was aslo deteriorating.  We had tried 3 different immunesupressant medications but they just weren't getting rid of the inflammation and on top of all the eye issues one of the medications caused a disruption to his pancreas and for 6 months he was also diagnosed as being Type 1 diabetic.  Thankfully, after changing to a different medication for his eyes, the diabetes gradually righted itself.  But Connor's vision was going downhill again.  
This prompted a trip to Boston MA to see Professor Stephen Foster, who is a world leader in this condition, as in he writes the text books, 14 of them in fact and has over 1000 published papers, so I felt it was safe to say he was an expert and worth going to see.
His recommendations included getting Connor on a medicine called Infliximab and off all steroids.  When he was in a steroid free remission he suggested removing the lens in his right eye if there is to be any hope of rehabilitating that eye and to remove the lens from his left eye and under no circumstances put an intraocular lens in this time due to what happened to the right eye.  
So in September 2010 we began our monthly trips to Westmead as the Infliximab has to be given by infusion.  This medication began to work and Connor's vision began to improve and for the next few years his focus was on seeing well enough to continue riding motorbikes and to eventually get his licence to drive.  In the 9 years since he began the infusions he has mostly been in remission and the chaos of the previous 4 years seemed to settle into a reasonable routine with not so many emergency situations with his eyes.  
Until of course 2 weeks before his 16th birthday which was on 6th of August this year, when he was going to be able to get his L's to drive, I notice he seems to be struggling to see at times.  Off to the opthalmologist we go and sure enough his vision has gone down 2 lines on the eye chart.  It's not the uveitis this time but that cataract that has been sitting there not causing too much trouble since 2008, but decides to change just before his birthday.  We manage to get him his L's but a week later we are at the Uveitis clinic for our 3 monthly check up and the Professors tell him he won't be driving for long, they also suggest that he should give up riding his motor bike and think again about his choices for the future.  They tell him that he will have to have the surgery they have been putting off for so long as the risks are so great and as he has no vision in the right eye, if this surgery goes wrong that's it. 
It's been a big shock for Connor who loves cars, motor cross, mountain bike riding and anything with an engine that can go cross country!  He's coming to the end of year 10 and has decisions to make about his future, which can be overwhelming at the best of times,  and not knowing if he will keep his vision and if so for how long is a big blow and has a big impact on the decisions he is facing.
So we have decided to go back to see what Professor Foster can do.  This is why we need to raise some funds, we need to get him to Boston to have his lens removed.  The one in the left eye cause it has a current cataract which is causing the decline in his vision and to have the implant that didn't work in his right eye removed.  Professor Foster has said that this "will be very tricky surgery" and "not for the uninitiated"!!  "But it is his only chance of any kind of visual rehabilitation"
We would like to get Connor to Boston as soon as possible so he can be given the best chance possible to keep his vision.  I am currently in the process of chasing information from both our Professors here and Professor Foster in America.  As and when I get further information I will update this page.
Any donation you can make will be very much appreciated, funds will go towards travel and medical expenses.  I thank you in advance for your generosity.  We are in the process of planning a number of other fundraising events so I will also let you know about them as they get planned.  
Again many many thanks for helping my boy keep his sight.  
Love and hugs
Amanda
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Donations

  • Dao Trang 
    • $200 
    • 6 mos
  • Marjorie Ritchie  
    • $200 
    • 8 mos
  • Anonymous 
    • $25 
    • 8 mos
  • Amanda Blaker 
    • $5 
    • 8 mos
  • Anonymous 
    • $200 
    • 8 mos
See all

Organizer

Amanda Lynch 
Organizer
Medowie, NSW
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