For World Retinoblastoma Week, we spoke to Michael about his journey from the childhood eye cancer retinoblastoma, his enucleation and beyond!
Background History and Diagnosis
My name is Ayokunle Michael Omotayo (Michael), and I was born on 1st October 1992 in Kings College Hospital, South East London. I was diagnosed with retinoblastoma in my left eye in1995 when I was 2 ½ years old. My mum noticed a shining light in my left eye and said I wasn’t eating well, frequently vomiting, was generally looking unwell and losing a lot of weight. She took me to the GP several times to and to several opticians who didn’t see a problem but was then referred to an Ophthalmologist who referred my parents to St Thomas’s Hospital which is where the diagnosis was eventually confirmed.
I was transferred to St Bartholomew’s Hospital in London under the care of Dr Hungerford. The best course of action was surgery to remove (enucleate) my left eye because the tumour was very large and the vision in the eye was lost. This was performed in July 1995 at St Bartholomew’s Hospital in London. The very renowned Dr Hungerford and his team skilfully fixed the implant in the socket that achieved the perfect eye movements to the delight of my parents. After the surgery there were a series of tests to check whether the tumour had affected the other eye. These were the longest 3 weeks wait as my mum recounted; after which my parents received the good news that my right eye was unaffected. I wore a protective glass eye for a couple of months during the healing process before an artificial eye was moulded and fitted at the Hammersmith hospital. My parents described the struggle and distressing experience of changing the glass eye as it has to be cleaned and replaced to avoid infection. I also sometimes wore patches or sunglasses on some days. Despite all this, life went on during the period of healing and I was still able to go on social outings with my siblings.
Social life and School Days
Growing up with retinoblastoma was interesting. I was very aware that I only had one eye which made me different to many of my peers. My parents did a great job of reassuring me and made me feel loved, valued and confident to excel in whatever I put my mind to. My mum was particularly very overprotective of me (as you can imagine) often keeping me close to her wherever she went and was always worried of the eye falling out unexpectedly. It also helped being the youngest of three children. My older siblings were also very overprotective of me and always had my back regardless. I remember having one or two instances where another child had made fun of me and I would go home and cry to my mum, but kids will be kids and these instances were rare and didn’t last too long.
Friends, Family and Social Activities
From a young age, I was very enthusiastic about education, and I excelled in school. My mum always made-up my “special” bag containing a patch, sunglasses and later with an extra prothesis as I had a collection of them. I also had a written explanation of my eye condition for the teachers and what to do if the eye accidentally fell out. I vividly remember the one occasion where this happened whilst I was in reception. I got carried away and started playing with the eye, and the eye fell out! I was very brave as I held the eye in my hand, but this caused a great stare in class from the other children who were also frantically screaming that my eye fell out! I was immediately taken to the headteacher’s office, who called my mum. I remained in the head’s office until my mum’s arrival. I was calm, confident clutching the eye in my hand awaiting my mum’s arrival. She rushed in from work and was so proud of me as she quickly took the medical bag cleaned the eye and fixed my eye back. As she took me through the corridor; other children were glancing and amazed not really sure if this was real or if they were dreaming. As if this was not enough, I also attended after school club as my parents had job commitments. One of the parents of the children in my class approached my mum a couple of days after the incident at school and said, her son came home the other day and told her that my eye had fallen out during story time. My mum: whether out of shame or overprotection, quickly responded, “you know children and their imaginative stories!”. Despite having an artificial eye, I was quite smart. I remember the teachers having to get books for me from the older years when I was in the reception.
I also had a love for sports at an early age (which would become more apparent later on). However, during primary school my main hobby was playing the trumpet in which I achieved a grade 5 at age 11.
I went to Dulwich Hamlet Junior School for primary school, Wallington Grammar for Boys for secondary school and St Francis Xavier Sixth Form for College. Through these years I achieved great results in my SAT’s, GCSEs and A Levels. I gained admission to Aston University and studied Mechanical Engineering and graduated with a 2.1.
Impact or Blessings
I would say retinoblastoma had very little to no effect on my ability to succeed in education. Within these years I also formed very good friendships, got invited to birthday parties, (although I wasn’t allowed to go to any sleepovers). I was a charming, likeable, and popular boy that people gravitated towards.
During secondary school, I largely developed my love for sports. I took part in every sport but mainly enjoyed rugby, football and basketball. Playing these sports with one eye was quite challenging, but I was determined and very resilient. It’s something I always kept to myself and consistently aimed to overlook to not give myself any excuses. I remember always having sprains on my left ankle due to my proprioception (your bodies ability to sense movement) not being the best on that side due to no peripheral vision. However, a positive of this negative was that it made my reactions a lot faster. Nonetheless, I was still able to perform well in these sports by staying determined and working hard.
When I was 19 years old, I started going to the gym at university which helped emphasise my passion for health and fitness. After university I decided to play American Football. In late 2016 at 24 years old, I dislocated my left ankle which resulted in me having to undergo ankle ligament reconstruction surgery with syndesmotic screw fixation. I had a further three ankle surgeries over a 4-year span due to some pain and complications that persisted during the recovery process. I wouldn’t say retinoblastoma was the main cause of this injury, but it did have its part to play based on having no peripheral vision on that side whilst trying to execute complex athletic movements. To help combat this, I had to train extra hard to improve my balance and stability on my left side during the recovery process. Despite this, I was still determined to push myself through a difficult recovery period and ended up competing and performing well at the BSN Combine in Indianapolis and the XFL Showcase in Washington DC in 2019 whilst still recovering; an achievement I hold very dear to my heart.
I am currently a personal trainer & sports performance coach. My determination to overcome obstacles and passion for helping others enabled me to combine my love for sports, health and fitness.
As a survivor of retinoblastoma, I know first-hand what it’s like to have adversity staring back at you when all you want is to achieve your personal goals. Life throws up various challenges, be it physical or mental and I take great pride in having been able to overcome these on my personal journey and now being able to help others with their own journey. I only realised the true importance of representation when I bumped into a young boy while leaving an eye check-up appointment towards the end of 2022. It was the first time I had seen someone else with my condition in the flesh and I saw myself in him. It was something I had never really thought about considering how rare retinoblastoma is, but it made me realise how much I had managed to achieve in my life so far despite what one would call a limitation. It made me think what if I had someone like me to look up to at his age. It would have made me a lot more comfortable and confident, especially during my teenage years where you’re very impressionable and a lot of your character and thought processes are developing. Representation is very important as it allows those that come after you to have a relatable role model. Someone they can look up to, take inspiration from and aspire to emulate will enable them to understand that they can also achieve great things too. Realising how important representation was made me further come out of my comfort zone and apply to join Zebedee Talent Agency. I’ve been doing some things I would have never imagined but really enjoying it and excited for what’s ahead on this journey.
My advice to anyone who has had retinoblastoma will be to not let it hold you back. Unfortunately, losing vision in one eye is something you cannot control, and you will experience things that most people won’t. Despite this, you must try to stay strong and allow the difficulties to motivate you. Overcoming obstacles in life in any situation is very rewarding but doing it with a limitation will give you that extra confidence and self-belief that’s needed to navigate through life. My advice to parents whose children have retinoblastoma would be to still try to treat their child as though they had vision in both eyes. Of course, some compassion will need to be shown as the differences will be evident, but it’s always good for a child to understand that they are “normal” from a young age. It can go a very long way! Take interest in your child’s passions and try to encourage them as much as you can. These passions can allow them to express and bring the best out of themselves which can further increase their self-confidence. It can also allow them to form friendships with other children and allow them to feel fulfilled. I would also encourage parents to encourage their children to engage in physical activity. Besides promoting a healthier lifestyle, principles of discipline, persistence and accountability will be learned subconsciously which can set your child up well for life. Understandably, there may be some worries about you or you child’s independent life as an adult, but I can assure that this can also be navigated through. I have a full driver’s licence and passed my test when I was 21 (DVLA wrote to me confirming I could drive before I started learning). Relationships and dating life have been great and cool too, having no vision in my left eye hasn’t affected my ability to do so!
Finally, the opportunity to write this account and my drive to attain and overcome adversities of life have been quite a therapeutic process and I sincerely hope it’s helpful for others. The journey up till now certainly wasn’t easy, but if I can do it, YOU or your child can too! Keep Going!
Our support team provide lifelong support to everyone affected by retinoblastoma. If you would like to talk to a support worker, please contact support@chect.org.uk or 020 7377 5578.