This is our son Viaan who came to our lives in April 2023. When he was 3 months old, we saw strange glare in his left eye, but we thought it is just a reflection from the light. Two week later we again saw the glare but this time we decided to do some research on Google.
The first hit was “Retinoblastoma” a rare eye cancer which mostly happens in children below 5 yrs. of age. We prayed and remained hopeful it’s not the case as we had no family history of cancer.
Next morning, we went to our GP for the review, and we pointed out what we feel this could be. Our GP referred us straight away to the A&E in CHI Templestreet. While we were waiting in the queue, we were constantly praying for it to be false positive news, but somewhere in the back of our minds,
we had already made ourselves ready for the this.
Dr Sarah Chamney conducted an extensive eye checkup using ultrasound and she confirmed that Viaan has tumors in both eyes. We were devasted. Dr Sarah and her team were really patient and empathetic in explaining and consoling us.
This is not end of world, we’ll fix it and glad we catched this on time. She told us that all the cases for this disease are treated in UK via HSE treatment abroad scheme. Viaan was put on list to get MRI done ASAP, so that the report could be sent to UK team to consultation.
Next in line was the biggest nightmare of paperwork. We need to get passport for Viaan and UK Visa for entire family. While were going through all of these, we could not count the numerous helpful people we met from embassies, workplace, hospital, and pharmacies.
John and Jayne from Gavin Glynn came to our rescue as Sarah recommended rightly. They stepped in guiding and managing the travel arrangements for us.
They not only took over the complete charge of travel arrangements but also helped us with expenses during travel.
Viaan got his first Chemo in Aug 2023, when he was barely 4 months old. Unfortunately, after the first chemo, his left eye tumor ruptured. We were asked to take a tough call on his behalf to either remove that eye OR keep trying the treatment.
We decided to have the eye removed as the vision was completely lost in the left eye. At the age of 5 months, he got his left eye removed.
We now visit Birmingham UK every month for his regular checkup and laser treatment in his only eye. Every time John and his team helps with travel & expenses.
John also helped us in connecting with airlines team every time to make our travel as seamless as it could be.
We are so grateful Gavin Glynn for helping us during this phase of life and we are happy that such a charity is available for families like us.
We will be forever grateful to The Gavin Glynn Foundation.
