How Blindness Helps Us See

Published on: July 22, 2022

BAMBI’s own Jessica Haines sheds some light on her experience learning about the rare genetic disorder Leber’s Congenital Amaurosis, after her newborn was diagnosed with it. It hasn’t been easy, but she hopes to raise awareness to support others in similar situations.

By Jessica Haines

“He may be able to see shadows and possibly large objects, but your son is legally blind.” These were the words said to us by our pediatric ophthalmologist.

At around three months old, I noticed Harvey wasn’t tracking any light or objects with his eyes. I shared my concerns with a few close friends and family. However, many of them thought I was being irrational and some suggested that he might simply need glasses, but they were sure everything would be OK. A couple of weeks went by and I spent many nights shining my phone flashlight in his eyes, trying to get a reaction, but nothing improved. That was when I decided to get a professional opinion.

By that time, Harvey was four months and we were about to jump into a whole new space we knew nothing about. We went through months of different tests, which were all just a heap of jumbled letters to us: MRI, ERG, VEP. It was such a horrible time. There we were, mid-pandemic with our beautiful newborn, no family around, leaving our daughter at home, while we sat in various hospitals, trying to find out what was going on with our baby. Never in my life had I Googled and cried so much.

Genetic testing confirmed Harvey’s diagnosis of Leber’s Congenital Amaurosis, more commonly known as LCA. LCA is a rare genetic eye disorder that can appear from birth through the first 12 months of life and is the most common form of inherited sight loss in children. LCA causes the deterioration of the cone and rod cells in the retina of your eye and most of the time, this is passed on because both parents carry the mutated gene (1). Although children with LCA are diagnosed as legally blind, this description can be quite confusing, as the amount of vision loss a child has can vary from child to child. There are currently 27 different gene mutations that have been found in LCA, and Harvey’s particular gene mutation—LCA – AIPL1 (LCA4)—is super rare, affecting just one in every million babies (2).

The day we received Harvey’s diagnosis was one of the hardest days of my life. I couldn’t understand how we were going to move forward, but we had to. We had to give this baby all we could and all he deserved. Looking back, I wish I could’ve told myself that everything would be OK, but at the time I don’t think I would’ve believed it. I didn’t understand how a ‘blind’ child would be able to enjoy life. However, Harvey has proved me wrong. He’s fearless, full of energy, and adventurous. He has a very busy weekly schedule including swimming, gymnastics, and playgroups. He will soon start nursery school! I never would’ve believed that my little blind baby could accomplish all of that. A book that helped me grasp Harvey’s potential is ‘Thriving Blind. It shares many experiences and successes of blind individuals. I read it in the early days and it made me hopeful for Harvey. Another help was Vision Australia, which is an amazing organization that has been providing us with professional guidance on anything Harvey has needed, since day one.

Harvey has taught us so much, and we feel it’s our job, as his parents, to raise awareness about him and other visually impaired children and show the world how much they CAN do. Following IG accounts like @Ourblindside, which features Ashton, who is also blind, has given us insight into what Harvey’s future may look like. Like all disabilities, blindness exists on a spectrum. Being ‘blind’, to me, originally meant living in total darkness, unable to see anything. However, in Harvey’s case, we think he has enough vision to help him get around, though he isn’t able to see details. He is and will always be—legally blind.

One of our biggest concerns with Harvey isn’t about how he will be independent; it’s more a worry about him being included. Inclusion is so important and we must educate and encourage our children to include others. Some children may do things differently, but it doesn’t mean they can’t do things. Education on inclusion between parents and children is key, regardless of whether there is a child with a disability or not. One IG account we follow for this very reason is @Ablecollective. This page highlights different disabilities and inclusion.

To do our part to aid with this education, we decided to set up our own IG account to share more about Harvey’s journey and how capable he is! If you would like to check it out, please head to @theharveyway_.

Photos courtesy of author

References

AAO Journal (2015) Preserved Outer Retina in AIPL1 Leber’s Congenital Amaurosis: Implications for Gene Therapy. aaojournal.org/article/S0161-6420(14)01092-6/fulltext.
See reference (1).

About the Author

Jessica is a mom of two from Australia. Her family moved to Bangkok two and a half years ago and they’ve fallen in love with the city. The hustle and bustle, and ever-changing nature of Bangkok is what she appreciates the most! In her free time, she enjoys spending time with friends and family, shopping, and trying new restaurants. Jessica has been with BAMBI for just over a year now and works very hard in the media department.

The views expressed in the articles in this magazine are not necessarily those of BAMBI committee members and we assume no responsibility for them or their effects. BAMBI Magazine welcomes volunteer contributors to our magazine. Please contact editor@bambiweb.org.

Tags: