ALEXANDER

We are from Johannesburg, South Africa and have a 3-year-old son, Alexander, who was born in August of 2018.

When he was born, we noticed his left eye would squint occasionally and we thought that he had a lazy eye, as his dad and Ouma both have lazy eyes. Fast forward to December 2019, we were on holiday and so many people asked us what’s wrong with his left eye. We decided to take him to an optometrist after the Christmas holidays. In January 2020, we took him to the optometrist and she also said it is just a lazy eye, but she saw yellow spots in his left eye so she referred us to an ophthalmologist. A week later we saw the ophthalmologist and he decided to do an EUA (exam under anesthesia). On February 13, 2020, Alexander was diagnosed with Coats’ Disease. The ophthalmologist informed us that he does not specialize in Coats’ Disease and referred us to a retina specialist, but he refused to touch Alexander’s eye! We then found our forever doctor. She had the reports from the other specialists and told us she will start with her own investigations from scratch, meaning another EUA, which resulted in a Coats’ Disease Stage 3a diagnosis. Alexander was only 17 months old at the time of his diagnosis.

Treatments started with monthly EUA’s with Avastin injections and Alexander currently goes every 10 weeks for them. He has had 14 Avastin injections, two laser treatments, and a cataract removed in the last two years. The doctor did inform us that she is working on saving the eye (which she has done) and anything more would be a bonus! He has been for two sight assessments and it has been confirmed that he has perfect vision in his right eye and light sensitivity in his Coats’ eye. When we look back at photos since his birth, Coats Disease could have been diagnosed as early as four months old. But we didn’t know any better and we thought the glow was just a camera flash issue!

On February 13, 2020, our whole world fell apart. We were entering the unknown, we have never heard of Coats’ Disease in our life before, and now Alexander has this disease. I asked why us? Why our son?… but then I thought to myself, WHY NOT US?! WHY NOT OUR SON?! Two years later it has become part of our family, and does not seem so scary anymore. You learn to accept and adapt. Facebook and the Jack McGovern platforms have given us so much information and a place that we know we are not alone in this fight. Information is knowledge and power!

Alexander is a typical busy little 3-year-old, climbing trees, jungle gyms, stairs, jumping off things, and catching insects. There is no stopping him, he is BRAVE, RESILIENT, and AMBITIOUS. He goes to creche, he loves his school, and he is always active! We have told everyone who is in our circle and not one person knew what Coats’ Disease was, so awareness is been raised just by word of mouth. To the parents out there that are struggling with accepting or just found out about Coats’ Disease, and struggling with this mountainous journey ahead, believe me when I say: every small step, is a step closer to the top of this HUGE mountain. We are more afraid of this journey than our little warriors are. Alexander has taught us how resilient and brave our little warriors are. He has taught me how to be brave and to accept the obstacles that life throws at us. He has a long journey ahead of him, but I know he will conquer this challenge with flying colors! Be Brave! Be Strong! Be Ambitious! Be Resilient! BE YOU!

Friendly greetings all the way from sunny South Africa.

FAQ

At the Jack McGovern Coats’ Disease Foundation, we are often contacted by anxious parents or patients who are seeking information after receiving a diagnosis of Coats’ Disease. The questions below are provided as a resource to assist you as you and your doctor decide the best approach for treatment. These questions do not constitute any form of medical advice or diagnosis. Each patient is unique. An experienced retinal specialist who has examined the patient is the best source of information for diagnosis and treatment. We always recommend getting a second opinion.

Questions to Ask Your Doctor (Download PDF)

  • Ahead of any treatments or procedures, it is important to ask yourself and the doctor the following questions:

    • How do you know that this is Coats’ Disease?

    • Has your doctor treated other patients with Coats’ Disease?

    • Have you sought a second opinion? If not, please consult our Doctor Directory for knowledgeable doctors in your area.

    • What Stage of Coats’ Disease is he/she in?

    • Will his/her vision get worse over time?

    • Will the eye have pain?

    • Will his/her eye start to turn out? Is muscle corrective surgery an option?

    • Are cataracts likely?

    • How likely is glaucoma? (due to retinal detachment)

    • Is there calcification?

    • What is the anticipated disease progression?

    • Is there a thorough vision exam available?

    • Where is the vision affected? (central/peripheral/distance)

    • Does he/she have depth perception? (3D visibility)

    • What about the non-Coats’ eye?

    • To what extent is his/her vision affected?

    • Will we be able to use this as a baseline to measure progress/decline?

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