In November 2020 Rebecca took her 5 year old son to school one morning, not knowing that later the next day they would receive the most heartbreaking news – that Leo had an incurable brain tumour.
Rebecca said “It all started around a month before his diagnosis, when we noticed he was becoming clumsy and bumping into things.”
Leo’s school teacher phoned to say they were worried as Leo had been acting unusually by staring into space and speaking slowing but by the time Rebecca picked him up he seemed fine. Rebecca simply thought Leo was just tired.
The family decided to get him checked out. Initially the hospital thought it might be a urine infection, but following a CT Scan showing a mass Leo was given an MRI Scan. The next day the family were given the shattering news that Leo had an incurable brain tumour, a DIPG.
Leo’s dad Barry said “When we found out it was, it was devastating.To think there’s nothing out there that can solve this problem makes the feeling so much worse. Nobody has ever survived a DIPG”
Rebecca says “we learnt about the horrendously poor prognosis for this condition and time seemed to stand still. We were in utter shock. The only thing that could be done was a course of palliative radiotherapy treatment. I just couldn’t believe that we had no other options”
Leo was given steroids to reduce swelling in his brain. The drugs made him balloon in size and he became very self-conscious, not wanting to look in the mirror.
Before his radiotherapy Leo had a visit from his school friends and the children were joined by the FC mascot Barry said: “It means a lot. It brought a smile to his face and made him happy. It’s not something you ever think will happen to you. You read about it happening to other people, but we didn’t think it would happen to us. We’ve no family history of anything like this.”
Rebecca says “I had good and bad days; I felt torn between wanting to sleep this unbearable pain away or to be there holding my boy, telling him silly jokes and making his little face smile.
Leo and his family, including his three siblings Caiden, nine, Mia, seven Rose, spent the next seven weeks in hospital as Leo received the palliative treatment.
The family packed in as much memory making as they possibly could before Leo died after a brave fight on 31st December 2021.
I'll always be Joss' Mum
£10
A gift of just £10 could help give support to a family who are struggling with a new diagnosis
£25
A gift of £25 per month could pay for a days pioneering research into rare brain tumours
DIPG brain tumours are currently an incurable and devastating cancer.
DIPG robs a child of their hearing, sight, movement, the ability to swallow and eventually their breathing.
It’s only with your help that research into this devastating cancer is possible.
Joss Searchlight are funding vital research into the most life-threatening brain tumours. Please be part of our journey.
FAMILY SUPPORT
Along with providing financial grants to help families struggling with the expenses of having a child with cancer we also provide life changing support.
Support Workers who advise, visit and support families with compassion are an essential part of Joss Searchlight.
Family support is in our DNA, as the founding trustees know what an important part compassionate support played in helping them during their son’s illness and after his sad death.
We can’t fund research and we can’t support families without you.
FINDING A CURE
At Joss Searchlight we totally depend on donations. Donations enable us to fund vital brain tumour research, to find a cure for some of the rarest brain tumours, to campaign for better treatments and support families on their cancer journey when they need it most.
Research organisations need funding stability, they need to know that they have enough money coming in every month to allow them to do their incredibly important work. We need to pledge a certain amount of funding every year to make sure they’re able to do everything they can to find cures and treatment programmes for some of the hardest-to-treat brain tumours.
Children should enjoy their childhood
Not spend their lives fighting cancer
Help us find a cure for rare brain tumours. Give your support today
