Nystagmus aka wobbly eyes, how this condition became the first noticeable symptom of my daughter’s vision impairment- by Charlotte Mellor.

I have written previously about my early diagnosis journey in discovering my daughter was vision impaired. Diagnosed at the age of 4 months, with optic nerve hypoplasia and then in later life, with complex needs.  At one point, it just felt that after every moment on processing the latest ‘condition’ to impact our lives, that something else sinister was lurking around the corner.

How times have changed!  At the age of 14 now, I am completely at peace with being the Mummy of a complex need’s child, everything has settled, in terms of medically anyway. I don’t see a diagnosis as sinister, just another facet of my absolutely perfect daughter’s life.

I still and always will harbour great fears over what the future may hold for my daughter;

“How can she ever live independent of me?”

“Will she have a full and happy life?”

“How can she be kept safe, when her safety will always be in the hands of another?”

“What will she do when I’m not longer alive?”


In terms of perspective though, I believe those fears are held collectively as all parents, although throwing additional needs into the mix may add a certain layer of complication.

I wanted to use this blog as an opportunity to write about the very early months of my daughter’s life.  On reflection, I know now that I was in denial that there was anything different about her vision.  It took for the comments of friends and family for me to finally get her booked in with an eye specialist.

There were two very clear signs from the star, her two big blue bouncy eyes!

Scarlett has the most wonderfully blue eyes, but my god- they don’t stay still, not much different from my daughter’s persona.  In the beginning, I believed that she was just inquisitive and was absorbing the world around her.  The cause of these bouncy eyes is a condition called Nystagmus and relates to the other vision condition she has, optic nerve hypoplasia.

Nystagmus is a rhythmical, repetitive and involuntary movement of the eyes. It is usually from side to side, but sometimes up and down or in a circular motion. Both eyes can move together or independently of each other. A person with nystagmus has no control over this movement of the eyes.

Scarlett has no useful vision and no light perception, but that is because of her optic nerve hypoplasia rather than the secondary condition, Nystagmus.  There is no cure for Nystagmus, and it can be diagnosed by various eye tests.  Each case of nystagmus will vary in severity and symptoms and reduced vision is common.

Nystagmus was the first sign that she had a vision impairment, so if you notice these movements in your own child’s eyes, I would recommend a visit to an eye specialist.


  1. Abdul Khalil Latifi June 14, 2024 at 9:25 pm - Reply

    I have a son who lost his vision and became blind after hospital negligence in Apollo hospital in New Delhi India. He was 9 years old when had brain tumour surgery during the surgery his optical nerve damage and lost his vision.

    • Charlotte Mellor June 19, 2024 at 10:08 am - Reply

      Hi Abdul, I am sorry that your son lost his sight due to hospital negligence. It must have been so difficult for you both to process. Sending lots of love and light. Best wishes, Charlotte x

  2. Jenna Walsh June 15, 2024 at 10:49 am - Reply

    Hi this story sounds exactly like mine, my daughter also has optic nerve hypoplasia and it also took people telling me to get her checked out. However two pediatric doctors told me she was just lazy but referred me because I was concerned. It was then I was told she had optic nerve hypoplasia. Later in life at the age of 15 she was also diagnosed with autism. She is now almost 18 about to start university and doing absolutely incredible things. She got unbelievable GCSE results including 8 in English, 7 in maths, distinction in drama. Nothing stops them. She is about to join VICTA on the trip to Rome. Things are finally going well but it’s been very hard in her younger years.

    • Charlotte Mellor June 19, 2024 at 10:06 am - Reply

      Hi Jenna, your daughter sounds like a force to be reckoned with! I’m so pleased she is doing well despite the challenges she faces. Hope she has a great time in Rome! Best wishes, Charlotte

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