A foundation being launched in memory of a Ramsgate four-year-old who passed away from an aggressive brain tumour in January 2024 will help other families going through the same trauma.
Mum Leanne Bain has created The BB Foundation in honour of son Brooklyn, a little boy known for his funny personality, love, and kindness.
Brooklyn was diagnosed with the aggressive brain tumour called Diffuse intrinsic pontine glioma (DIPG) in October 2023.
The much- loved member of the Regency Dance School and Ramsgate Arts Primary, had undergone radiotherapy treatment at the Royal Marsden in a crucial effort to pause the tumour’s growth and provide his family with more time to spend with him.
Sadly, he passed away on January 5th, 2024.
DIPG (now referred to as Diffuse midline glioma) is a rare and aggressive brain tumour which almost exclusively affects children aged 4 to 11. Approximately 40 children per year develop DIPG in the UK.
There is no cure and the progression of the disease is extremely distressing for the child and their family.
Leanne said: “The foundation is for families with a DIPG diagnosis. There is so little information out there which is something I really struggled with. Even from a medical point of view, it is so rare that there is little information shared.
“Even looking for other families’ stories, you can barely find anything so you do not know what to prepare for or what to expect.
“Personally, I would rather have known and I would like to offer that to others who want it. Everything happens so fast. I took Brooklyn to a GP appointment after school and he never really came home, he went from the GP to A&E, King’s and Rainbow ward.
“I didn’t even have my purse with me for hospital parking.
“I want to set up a GoFundMe and build on that funding so it can be shared to families with DIPG in whatever ways they need, whether that’s hospital parking and a coffee or they need to buy a specific wheelchair and car seat, you just do not have this stuff.”
Leanne, 37, aims for funding to also support organisations that provide vital care, resources, and advocacy for the families.
She said: “Rainbow ward, Demelza and Royal Marsden are the primary organisations that I’d like to donate towards as they helped us but there are also other places across the country that I’d like to reach when we are big enough and established enough, when the foundation is growing like Brooklyn should be.”
Funds will also be used for new and varied toys. Leanne said: “I remember toys in the play room were old or had missing parts.
“At Royal Marsden they got Brooklyn through radiotherapy but when he got too ill to be anaesthetised he had to be pinned down with a mask on. For a four year old in pain and so ill, it was distressing.
“But he had a present every time for getting through it and it would be things he loved. So, he loved Tonies and got two or three Tonies.
“So, this is about reaching out to find what the child really likes and then we supply it or send vouchers for it.
“At Demelza it was like an Aladdin’s cave, they have a room full of toys and crafts for different ages and there is a lot more choice. That is all done with donations.”
And so, the first charitable act for the foundation has been the delivery of some 250 toys to the Rainbow Ward at the QEQM, where Brooklyn spent his last week and sadly passed, and Demelza Children’s Hospice, where Brooklyn spent some time between hospitals and treatment.
As well as already distributing the collected toys through The BB Foundation, close family friend Natalie Chadd and her family, along with The Token Tigers Karate Club, also organised a toy and craft donation in Brooklyn’s memory for the Rainbow ward.
Leanne says that for her and Brooklyn’s siblings Ellis, 16, and Maddie, 14, it was the community support and fundraising, particularly from Regency dance school, that helped them.
She said: “Without them we would not have made it through, without people’s generosity I would have lost my house and everything. We could not have got through without that community support and kindness as our world crumbled with the loss of Brooklyn.
“That’s why I want to build the foundation, to support families going through this and, with lots of people still asking if they can fundraise in his memory, to become a central point where donations can be made and then redistributed via the foundation to those in need.”
Leanne will be helped to carry out that work by her children, family and some close friends.
Leanne says a central plank to the foundation is directly supporting families facing the devastating reality of a DIPG diagnosis, adding: “We are committed to ensuring that every contribution makes a meaningful difference to those enduring the unimaginable.”
In the mission statement for the foundation, it says: “Beyond financial support, the BB Foundation is rooted in honesty and lived experience. “Having walked this journey ourselves, we aim to offer real, compassionate guidance to parents—especially mothers—who are suddenly thrown into a world few understand.
“DIPG is rare, and information is limited; nothing truly prepares you for the speed, the loss, or the life that follows. Through open, truthful, and sometimes brutal insight, we seek to help others feel less alone and less unprepared, even in the darkest moments.
“The BB Foundation stands for remembrance, awareness, support, and truth—so that no family has to face DIPG feeling unseen, unheard, or completely in the dark.”
Leanne is currently working on CIC status for the foundation and will then set up a website, expected to be in the new year.
The progress can be followed on The BB Foundation Instagram page and contact can also be made through that account for anyone wanting to fundraise or make a donation.
She said: “I am always grateful and happy for people to remember Brooklyn and raise awareness. So many people are doing different things in his memory, especially at Christmas and the time he passed, and I want to be able to share that with those other families in need.”
