My name is Lina and my son Andy is 2 years old. We live in Mississauga, Canada. 

I had a very easy/awesome pregnancy with Andy. Once he was born we noticed his eyes weren't opening but we thought they were swollen from birth. After a few hours a nurse came by and was checking his eyes, noticing she couldn't open/find them. This is when all our worries began. The first few weeks and months were a wirld wind of appointments, emotions late nights that caused lots of stress to us and Andy.

But once everything settle and we had all test results, and started the conformer process things slowed down and we were able to fully enjoy time as a family and enjoy our little Andy.

Andy is an amazing little guy that loves music, water (pool, bath time, washing his hands), climbing, outdoors and it's so happy and positive.

We were so lucky to connect with the CNIB (Canadian national institute for the blind) they have been amazing at helping us get all the resources like early Intervention and orientation and mobility for Andy. Also, we were able to meet families with blind children as well as an older child with bilateral anopthalmia.Having this connection plus being part of BAAM Facebook group has taught us so much plus it gives a sense that we are not alone.

Andy is now 2 years old and thriving. He goes to daycare, talks and sings a lot, is super cheeky/funny and acts like any other 2 year old toddler. We love him so much and can't wait to see him grow up and be the best he can be.

My advice to other parents is to enjoy your children, treat them the same you would do as a sighted child, expose them to all activities, environments..... you will be amazed at what our children can do!

At the beginning I understand it might be hard and different emotions will arise. It's normal, but also take time to fully enjoy every moment as time goes by so fast. 

Aanju Shivakumar and his family from Singapore

Meet Aanju, a 14-year-old dynamo known for his obedience and positivity. He's a listener and a repeater, embodying the spirit of good behavior. Aanju's world revolves around supportive friends and family who appreciate his sunny disposition.

Annoyance isn't in Aanju's vocabulary; he thrives on constructive conversations, steering clear of complaints. This unique trait makes him a beacon of encouragement in his community.

Passionate about horse riding and fascinated by plane takeoffs and landings, Aanju is a young explorer at heart. His life's soundtrack? Devotional songs that add a spiritual touch to his daily adventures.

Music is key for Aanju—also he loves timely meals and getting ample rest. As a teenager, he embraces exploration, turning every trip into a journey of BAAM self-discovery. Apart from Echolalia, Gobal Development Delay.

Kelly, Barry & Toby from Kent UK

The Baby we were expecting !

 by Kelly Ott

We knew something was going to be “wrong” with our baby. I was diagnosed very early in my pregenancy with a very large ovarian cyst. This required two weekly scans. The second scan highlighted that our child had reflux and malformed kidneys. The ovarian cyst was forgotten but a question about the probability of Downs was a possibility. We were sent to the Harris birthright trust under Dr Kypros Nicolades at Kings College Hospital in London for a more detailed scan and investigations and a sample of amniotic fluid. We were informed that there was no trace of downs but confirmation regarding the kidney condition.

So whilst we prepared to have a son with severe renal impairment but we were unaware we would have a baby with bilateral anophthalmia. No eyes was a condition we did not expect. Or had even heard of.

The birth of our son Toby was as much a shock to us as it was to the delivery staff, midwifes and doctors at our local hospital. Our Toby was our first baby. Something to be proud of, but a child with no eyes.

We were left alone in the delivery room for hours awaiting a diagnosis. All of us knew something was wrong with our beautiful Tobys  eyes. The worst part of the experience was being separated from other parents and placed in a side room. Word soon got round on the ward and I became scared to move from the room. Medical students and midwives were a plenty! I think the worst thing was that my husband Barry had to call friends and family telling them of our son’s condition.

Four days later we were rushed to Great Ormond Hospital due to his kidney condition, as this was paramount and a risk to life. At the same time the staff at GOSH told us how important it was that our son had shells fitted to stop any malformation of his sockets and bone structure. So started a long association with Moorfields and its wonderful medical team of Richard Collin, Richard Downes, Nigel Sape and of course Nick Ragge who have become our extended family giving us answers and guidance.

The worst part in those early years was asking why? Had I eaten something? Been somewhere? Had I put my son at risk during pregnancy? I had heard that Russian medical teams were doing pioneering work in this area of medicine so I contacted the embassy but to no avail! 

In those early days there were many theories involving environmental issues that may have caused our sons condition. It would have been so easy if it were true. An answer? It would be no blame no shame.

Barry  and I talked about whether we would have another child. Thankfully we decided that we should focus on his health, development and growth into adult life. 

Imagine?  With the information we have now and had gone on to have another son born without eyes or a daughter who could be like myself the carrier of the Bcor gene.

This diagnosis has had a huge set of implications not only for me but also for my close and extended family. It would have been easy to blame “environmental” factors but no it’s genetic.

We are a family of girls reaching as far back as pre 1900’s hence no history of anopthalmia in our family until our son was born. I now know that my niece, my great grandmother may have this gene. Therefore my niece can now have the tests to confirm yes or no if she has this gene. She will be able to make choices regarding her future possible family. A choice I did not have nearly 27 years ago. She has witnessed how hard it has been for our son and for my husband and I living with this condition.

More information has been given to us that links the Bcor gene to heart conditions therefore further investigations will need to be made to confirm what our son faces in the future.

What would we do without this information? This highlights the importance of families being able to have this level of genetic testing at the earliest opportunity rather than the wait we had for 27 years. This level of support to give families and the individual affected answers is of paramount importance. As is shown in our case. It not only affects the past and the present. But the future. The future of those yet to be born. It would give families the choice of making the right decisions and understanding why they have a child born with such a condition.  A child like our son who we love with all our hearts, who has gone on to lead a fulfilling life giving us so much joy and happiness.

I like to think of the quote “ Parenthood is about a raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding your child is exactly the person they are supposed to be. And if you’re lucky, they might turn out to be the teacher who turns you into the person you’re supposed to be”  

Thank you reading my story Kelly

Katie & Esme from Lincoinshire UK

When Esme was born we had no idea anything  was wrong. That night about 8hours after birth about 1am so very tired a woman  came in poked her in the eyes and said "I cant open them their must be a problem" and then just walked out, we had to wait till the morning  and then meet with another doctor  that said he thinks shes got no eyes. So I had to stay in hospital for 5 days to wait for a CT scan. 

A week later we got the results that her brain looked good but she had no eyes. In the beginning  I was in denial  I have never heard of someone  being born with no eyes, and however stupid it is I didn't think it was possible. 

There were so many hospital  appointments it was so overwhelming and I wanted to take her to baby groups but was scared  about what people would say and do. When she was about 5 months old we finally took her to a baby group and everyone was lovely, but at the same time that's when I started to get really down about everything  because I was watching other babys do things like reach out for toys and looking in mirrors and Esme was just sat there. 

But after a few months I saw a program and on it there was a couple that lost their baby at 6 days old, and I thought I'm being  silly my baby still here and happy, that changed my thinking still get down days but it's getting better. 

She started  operations at 8 weeks old to open her sockets and that was a very scary  and stressful time, we didn't  have much luck with the ops shes had 6 but we decided  to stop them just after her second  birthday. When she is about 7 years old we will talk to her about the operations and she can choose  if she wants to try them. But now she is 3 years old and shes amazing picks things  up really quickly shes working with a SEST team who teach her textures and braille  training  and every time they set targets  she is hitting  them within a couple  of weeks shes very clever and has an amazing  memory, shes also cane training  and doing great in that. She is becoming  better at playing with her friends  at nursery  even though  she can be very quiet  when there. Loves climbing and if someone  tells her she cant do that be shes blind she will do it  and prove them wrong even if she need a little bit of help. 

Still get down days but its things you cant control  like when at the park she wants to play with the other kids but they are to busy running around, one day she heard a little boy and girl who were on the same thing as her she said "friends" then they ran away and she said "friends gone" she said it in sad voice and I felt sad because she cant just run around and play. But we have even had parents take their kids away from Esme and that makes me so angry but we are getting better days and with me and her  dad we appreciate what we can see more and have learnt how to describe it aswell. 

Esmes now 6 years old at mainstream  school  she is struggling  with a lot at the moment, she's not great at understanding  or expressing emotions, starting to really understand  that she is different  (we have always been open with her about her condition)  but help is in place and she's also  been  diagnosed with autism now so new challenges  ahead but with all the struggles she's amazing, funny  and a very clever  girl. Loves to be active, very good climber with no fear😬 and she will do amazing  things in life. 

Even though  it's been hard at times shes the best and we love her lots, shes just perfect  to us.

Karina Rijo & Joshmanny from Florida, USA

Joshmanny just turned 6 months last week and per the Doctors he is doing really good. Some of his health issues are the micro-peny, trouble swallowing which he still use the nipple for premature babies. We tried this afternoon giving him solid food for the first time, but it wasn't successful due to his swallowing issues. His skin is extra sensitive, can't be too much time outdoor cause he gets rashes and suffer from severe eczema.

Being a single mother had been very tough at the beginning adjusting to this new lifestyle, but with the support of family,friends and now the group of parents in BAAM has been very helpful and happy moments. 

Joshmanny is very active boy and loves to play. He is a kisser and a lover and is always smiling 😃. He is learning to control his head at a slow pace, but he is very strong and eats a lot. Also, very friendly with any stranger that approach him he start babbling like if he is having an actual conversation with that person and know them his entire life. 

He is the best thing that ever happened to me, specially when I was told that I could never get pregnant and God sent me this beautiful angel that brings joy to our life. 

Attached is a picture of my family. My parents, my brothers and my niece. 

Also, I want to thank you for creating this group and giving us the opportunity to share our experiences with our little ones and support us.

God bless you and your family.

Karina Rijo 

Toby - Bilateral Anophthalmic from Kent

I was born in 1989 and from what my Mum and Dad have told me the first few years of my life were very traumatic as Im sure you have read in my Mum Kellys story. Lots of operations for my kidneys and just lots of time in hospital at both Moorfields and Great Ormond Street in London. I had amazing support from Dr Richard Collin, Prof Nicky Ragge, Dr Sara Liederman, Dr Trumpter, Jean Cavanagh, Carolyn Woods to name just a few. 

Soon it was time for school and I went through primary at two schools. Later I went to Crown Woods School and was part of the mainstream with support from the VI unit. I must admit this was very diffrent to my experience at primary.I then went to the Royal National Collecge for the blind for 3 years. I lived in a residential house close to the school. Mum and Dad would come every weekend and they even bought a place where we would stay. That was great.

I ended with these qualifications so remember being blind is no hurdle to Education and Qualifications

Crown Woods School

GCSE, History, Math’s, RE, English Language, Music, Spanish,Citizenship Studies, English Literature & Level 4 Piano Theory & Performance 

Royal National College for the Blind Hereford

• BTEC in Performing Arts 

• Music Performance Techniques

A Level

History & Music

Goldsmith College

Foundation BMUS Honors Degree In Music

Greenwich University / Lewisham College

(Graduate) Higher National Diploma Business Information Technology (With Merit)

My love for games has given me the chance to test games for many major manufactures and I really enjoy doing this. But a full time job would be good. But I continue doing game testing a s volunteer.My gaming interest and playing resulted in the film " Gaming Through New Eyes " ( click my picture to watch via a youtube link) made by my friend Berk Icel.  I am also supporting many blind gamers who come to me for advice re games for the blind but also some visual games. 

I have travelled with my parents all over the world visiting some amazing countries. I have friends who I speak with all the time across the world and generally enjoy life.  Plus my big love is rollercoasters which I have visited all over the world.As you can see I have parachuted, I have been on the longest zip line in the world in Costa Rica, flown a glider, driven a car, yes driven a car. I have met some amazing people over the years and also helped Chris Tarrant present his breakfast radio show here in the UK several times. There are no barriers to blindness.

 I am very happy and enjoy life. I have lovely parents, family and friends. And now my girlfriend Justine in my life. My Mum is brilliant as she assists me in many social and personal aspects of my life. My Dad is the tech guy who helps me out now and again! 

I have been seeing my girlfriend Justine since 2022, we see each other all the time`

So remember this  " being blind is not my problem it's other peoples"