Battling Seb’s Brain Tumour

Our happy, loving son Sebastian, was diagnosed with a brain tumour in January 2021 at just 15 months old, in the prime of his development.

Seb’s tumour is a huge Optic nerve glioma which is located right in the centre of his brain and affects his visual pathways as well as many other cognitive functions. It is potentially life threatening. We are dealing with this one day at a time.

This is a rare form of tumour that does not seem to have any known genetic cause. Just a cruel and terribly unlucky case. We are exceptionally frightened as Seb has no vision in his left eye and is at risk of loosing all vision completely when the tumour next grows.

The tumour is inoperable due to its midline location.

Seb has almost completed 18 months of gruelling chemotherapy. Causing side effects such as being 'neutropenic' which means he has a reduced immune system and cannot fight off infections, bowel problems, sickness, loss of appetite, weight loss, sleep disturbance, hair loss and lethargy, all of which has been extremely unsettling for Seb, who at his age, cannot communicate with us what is wrong or how he is feeling.

Seb has already undertaken multiple brain surgeries due to suffering hydrocephalus as a result of the tumour. As well as having a line inserted so he can have regular chemotherapy and blood tests every single week for 18months.

The goal is to keep the tumour stable and to retain as much of Seb’s functions and quality of life as possible.

Chemotherapy works well to attack fast growing cells but not so well on slow growing cells. Chemotherapy therefore is often not effective.

We have discovered an immunotherapy that is only available in the United States at a cost of £150,000. Research is suggesting that this would attack the tumour and allow his brain to recognise and attack the tumour cells on its own. This could be life changing for Seb and allow him to keep his eyesight.

Donations

Any donations made will go directly to Seb’s fund so we can give our son the opportunity to keep his vision. 

Any money not used will be donated to the life changing work at The Brain Tumour charity. 

Thank you, each and everyone of you, who donate. You’ll never know how much it means.

Seb’s Mummy & Daddy

Xx