“Anastasia was a perfectly normal girl. She was doing really well in school,” said her mum Alex. “She was a singer and dancer. Totally healthy and normal girl.The diagnosis came completely out of nowhere. We noticed one day that she was a bit weak on one side”. Weeks after her sixth birthday in 2021 Anastasia was diagnosed with an aggressive brain cancer (DIPG). Doctors told her parents it was incurable and gave her around 12 months to live.
Her parents Alex and James spent 14 months caring for Anastasia at home and building her a “palliative paradise” so that she could enjoy the last few months of her life. They wished Anastasia to be cared for at home as the family wanted to be together rather than being in hospital.
Anastasia was unable to walk and confined to a wheelchair so the family installed a wheelchair lift so Anastasia could still access her rainbow-decorated bedroom and they also built a steam room to help Anastasia to breathe.
As Anastasia’s symptoms worsened she lost her speech and became reliant on communicating through sign language and via Makaton, a language program for people with communication difficulties.The family also staged an early Christmas turning their home into a Winter Wonderland. They were determined to give her a memorable Christmas.
“The cancer was so pervasive. She was fighting so hard, she was so driven to not let it knock her down,” her mum Alex said.
However, Anastasia soon began losing more of her abilities and eventually was unable to eat without the use of a feeding tube.
“When she was unable to eat entirely, that was the most heartbreaking thing” Lisa said.”You’re always trying to be positive, but there’s nothing you can do.You watch your daughter’s body die around her.”
By April 2022, Anastasia’s condition had declined to the point where she was unable to speak, eat, or even hold a pencil.Lisa said: “Anastasia was unable to do anything meaningful. We couldn’t even give her tastes of food anymore.”
Throughout the trauma, Lisa said she became very close with her faith and resorted to prayer.
“In May, it became very evident it was her time to go,”We were watching it get worse and worse and there was nothing we could do. As she passed, we were holding her and talking to her. We told her how proud we are and how much we love her,”
Anastasia died age 6 on 22nd May 2022
How the cost of living crisis is affecting families
Alex’s daughter Anastasia was diagnosed with an incurable brain cancer (DIPG) and given perhaps 12 months to live.Anastasia’s parents Alex and James chose to keep the family together by caring for Anastasia at home.Alex said that even as her daughter’s condition deteriorated she was struggling to afford to keep the heating on due to the cost of living crisis.
“The cost of living has just skyrocketed,” Alex said. “We’ve had to turn the heating off twice. We just want to spend time with her but all my time was spent worrying”
Anastasia, was diagnosed with an aggressive brain cancer a DIPG tumour, is unable to speak or walk and had to eat through a feeding tube.
Alexandra, a support worker, said: “Anastasia was getting towards the end of her life and we were still having to rattle around for money. Our heating went gone off twice as we had run out of oil. It was just impossible.It got so bad we were all camped in her room with a wood burner. We were throwing wood on the fire to make the room warm enough to get through the night.When we ran out of oil we were having to put heated blankets on Anastasia because she was turning blue”There are weeks when we can’t afford basic things. We put away £1,000 for last Christmas but that was eaten up beforehand by food and heating costs.”
I'll always be Joss' Mum
A gift of just £10 could help give support to a family who are struggling with a new diagnosis
A gift of £25 per month could pay for a days pioneering research into rare brain tumours
A gift of £50 could fund research into devastating brain tumours in a clinical trial
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.
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