A family have advised parents to be on the lookout for "obvious signs" after their five year old son was diagnosed with a brain tumour and genetic condition that have severely affected his vision. Mum Jen Geerjanan, 38, said she thought that the 'spots' on his boy's back were nothing more than just some harmless birth marks.
"Knowing what I know now, it would be very obvious that this was the first sign that my son had Neurofibromatosis", said Mrs Geerjanan. It all started when her five year old boy Eashan was taken to an optician after teachers told the parents that he had sight problems in September last year.
However it was not until later on in December when he underwent an emergency MRI scan in Derby before he was transferred to the Queen's Medical Centre (QMC) in Nottingham. Mum of two Mrs Geerjanan, who lives in Borrowash, Derbyshire, said: "One day, I picked him up from school and he could not see me - it all changed that quickly.
"It was a very stressful and scary time. The doctors found he has a tumour on his optic nerve and that was the first time I have heard of Neurofibromatosis", she added.
The condition that Eashan was diagnosed with - Neurofibromatosis type 1 (NF1) - is a genetic condition that causes tumours to grow along your nerves. The tumours are usually non-cancerous in the beginning, but may cause a range of symptoms.
"We did not know that one of the most common signs of having NF1 is to have marks on your skin. He was born with those, and we were told they were some birth marks - I feel guilty because I wished I knew about this condition.
The marks on Eashan's back are commonly known as 'cafe-au-lait spots'. While a person would need six for a diagnosis, his mum said the boy "has too many to count since birth".
Eashan, who is now a third of the way through his 18-month treatment of chemotherapy, has been described as a "always bubbly and inquisitive" boy by his parents. He has had the intensive phase in January, and now has regular visits to the Paediatric Oncology ward at Nottingham University Hospital.
"We were told that he was never going to get his vision back", the devastated mum said. "And that was even more devastating than being on chemo because that is affecting his whole life.
"He has had his vision return in his right eye, but he still cannot see with his left eye. When he had his second MRI, the doctors told me that his tumour has shrunk. It is never going to go away because you cannot operate on it, it is in too much of a sensitive place. But it has shrunk since January."
Even after he finishes his chemotherapy, Eashan is at risk of developing tumours for the rest of his life. "We hope for him to be stable and we hope for his vision that he has now to remain. But the future is uncertain."
His mum added: "Every day is up and down. Eashan has amazing strength and resilience which helps us all."
Eashan's dad Brij Geerjanan, a senior consultant engineer, 37, said the diagnosis came as a shock to him and the rest of the family. "It was like the alarm bell rang and then we suddenly knew what was going on. It kind of took us by a bit of a surprise.
"Then we went to the QMC and you just get to realise the environment that you are in. There are so many amazing boys and girls who are there with their parents.
"It can sometimes be a difficult environment, because everyone is there for a very specific reason. It is an oncology ward - so every child there has a cancer related issue. So that is when we realised how serious it was."
The family have praised the staff efforts at the QMC, and they are now raising money for the Paediatric Oncology ward at Nottingham University Hospital that have cared and continue to care for Eashan. Their cause raised £3,416 at the time of the publication.
"Eashan is our inspiration - it takes a lot to bring him down", said Mr Geerjanan. "We started this journey and we met the amazing nurses and staff on the ward. The nurses are absolute superheroes, and they go the extra mile every single day - they really care for all the children and families."
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