Open letter to anyone with a child recently diagnosed with aniridia

I am writing this to give reassurance and a firm (but virtual) shoulder to lean on. No doubt you have just returned from the hospital, numb with the news that your child has been diagnosed with a rare eye disorder called aniridia.

Or perhaps you have sat for days, thinking about this rare disorder, thinking: why has this happened to our child, to us? What is going to happen now?

If you have by now fired up the internet, you will be disheartened to see there is scant information on aniridia. Wikipedia have tried (bless them), so too have RNIB. But the real reason why you have searched, scoured and poured over all of this precious information is missing from those pages. You can talk to your consultant about tests, future prognoses, the differences between sporadic and familiar aniridia; all of those things. But I imagine what you really want is some sort of personal account of what it is like to have a child with aniridia and what sort of life does this child have?

I can write this letter because my son has aniridia. I I know how terrifying it is to find out your child is visually impaired. And to add to the unfairness of the situation, the disorder so happens to be very rare indeed. This ultimately means that few people – other than specialist consultants and of course the wonderful Aniridia Network UK – do not understand your child’s condition. Let me repeat that: few people will understand your child’s condition. Your child’s school especially. Be prepared to spend time talking to your child’s school. Be prepared to get angry when your child has been placed at the back of the class because a teacher has ‘forgotten’ about their needs. All of this will happen. Ignorance can be very annoying.

I digress. You would like to know what the future will hold for your child. I have learned to trust my son’s judgement. When he was diagnosed, aged four, I was the stereotypical over-protective parent. I held his hand far more tightly than I would my daughter’s. I dressed him because I could not bear it when he would come downstairs with a t-shirt back to front or inside out. This was ridiculous. He was acting like a ‘normal’ (and I hate that term) four year old child, and yet, because he had been given this diagnosis I treated him differently.

Photo of mum and son

Lisa and son Daniel

My son is now 14 years old and a typical teenager. I will list the things he finds difficulty with:

  • Getting up on time for school.
  • Going to bed at a decent time.

These are the things he excels in:

  • Cooking – he makes awesome scrambled eggs. His fairy cakes and biscuits are amazing.
  • Riding a bike – he conquered this when he was 10 years old – a proud moment.
  • Ice skating – he has a unique style.
  • Writing – he has been published in a local anthology.
  • Science – currently taking an online university course, studying molecular changes in cancer cells.

We have had bumps in the road, like all parents do. He wanted to be a firefighter when he was eight. My husband and I didn’t know what to do. Part of us wanted to maintain the fantasy, we didn’t want to crush his dreams. And the more realistic part of us knew that he would never be able to choose this career. We wrote down a list of ‘nevers’ and the one that hurt the most was that he would never be able to drive.

We sat down with our son and went through the list. It was one of the toughest things I have ever had to do. More soul wrenching than all of the hospital tests he has been through. It was hard for him because he loved watching his dad drive and was fascinated with motorsports. I am glad to say that now he is a teenager and has friends talking about taking driving lessons when they are 16, he smiles and says that he’s going to buy a car and hire a chauffeur!

You have to trust your child. They will find their own way in dealing with the enormous disadvantage they have been given. And it is a disadvantage. They will have to fight harder, shout louder, be smarter than any of their peers. They will be an easy target for bullying – my son has had his fair share of that – and may find it hard to make friends. But make friends they will. The day your child comes home from school, beaming from ear to ear, saying: ‘I’ve had a really good day’, will make up for all of the heartache of hospital visits and tests.

I hope you have found this letter some comfort. I want you to know that life with aniridia isn’t bleak. It isn’t the end of the world. For a time, I thought it truly was. I was bereft at the thought of my child having this condition/disorder/thing and felt guilty for perhaps being in some way at fault for this. But now? My son has a great life. He has a small circle of friends. He has a girlfriend. He is loved for who he is and he has a great future ahead of him. Next year, he visits Cambridge University to see if it’s the right place for him to study science. I am a very proud parent indeed.



About littlelise

Currently studying Creative Writing at Nottingham University. Poet, short story writer, frustrated novelist and newbie blogger.
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1 Response to Open letter to anyone with a child recently diagnosed with aniridia

  1. Anna says:

    Thank you so much for sharing your experience. Aniridia is so rare that it can often be difficult to find resources or support. My son, diagnosed with aniridia at 3 days old, is going to enter Kindergarten in a few months. Thankfully, his vision is pretty good, but he does wear prescription glasses and he has cataracts in both eyes (although they haven’t grown since birth). When his ophthalmologist informed us he won’t be capable of nighttime driving (but “let’s wait and see about daytime driving,” it broke my heart. Given that he is still over a decade away from driving age, I am hoping that he will be able to drive during the day. I am having such a hard time with all of the unknowns, but I’m finding it near impossible to figure out when to have that talk to discuss how different his eyes really are. At 5 years old, he knows that he has special eyes that need sunglasses all the time when he’s outside, but that’s about it. I don’t know how much I need to tell him about his condition at this early of an age. His preschool teachers have been amazing with him, but now that he’s about to enter Kindergarten, I feel so anxious and scared. He is outgoing and super sweet and has made lots of friends in preschool, but I still worry about him getting bullied about his condition. I get so worried about the limitations that may pop up in the future and how he will be able to adapt. It was very inspiring to read you and your son’s experience and I hope you both are doing very well.

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