The current monster he’s fighting

Retinopathy is a general term used for damage to the retina of the eye, which is usually caused by something else such as diabetes, hypertension, radiation or direct sunlight. The sprouting of new blood vessels is the common denominator and may cause severe vision loss or impairment, or 

blindness, particularly if the macula (centre of the eye responsible for fine vision) becomes affected. Radiation retinopathy can’t be seen from the outside…

Radiation affects blood vessels and starves them from oxygen, which is how tumours are killed. A possible side effect of this process is that new blood vessels begin to develop. These new blood vessels often leak fluids. If leakage is present in the eye it usually leads to blurred vision, distorted vision and areas of dimmed vision, often affecting colour vision.

Treatment options are limited and includes laser to close the leaking vessels, cortisone implants (Ozurdex), and anti-VEGF injections (Avastin/Eyelea) which stops the enzyme responsible for telling the eye to make new blood vessels. 

Where we are now…

Gustav has diffuse leakage (i.e. its like a sieve) so laser treatment is not possible. He also has macular oedema (swelling), which affects sight negatively. He has received several Avastin and cortisone injections and implants, which improve vision in the short term, but over the last 5 years, since diagnosis, the eye has not improved. We have to continue treatment though as without the injections the eyesight deteriorates.

His vision ranges between 16/100 and 20/100 in his only eye, which technically means that he is blind. We have not accepted that fact and will try everything we can to improve his vision and help him to lead a normal life.

His central vision is most affected and he uses his peripheral vision to read. He has honed certain other skills like timing and memory to assist him in everyday life, and applies these skills in the school environment to get by (he plays hand-tennis like a pro). As he gets older and the pace at school increases his low vision becomes more of a challenge, and we need to find other ways to assist him to succeed. In 2014 he started using a globe magnifier to assist him with reading, and a monocular for seeing far. In 2016 he also started wearing glasses permanently.

His sensitivity to being ‘different’ has improved over the last few years, but he still has a way to go. At least he has accepted his prosthetic eye to such an extent that he will show his collection (the eyes he’s collected over the years) to his friends.

He is able to live a perfectly ‘normal’ life, especially with his low vision tools, and can do everything the other kids can do, sometimes the route to getting there might just be a bit different.