Wolverhampton girl with rare and aggressive cancer helps fund vital research into disease
Fundraising by a Wolverhampton schoolgirl who was diagnosed with a rare and aggressive subtype of leukaemia has helped fund vital new research into the disease.
Ayla Foster was just three-years-old when she was diagnosed with the high-risk and hard-to-treat Philadelphia positive acute lymphoblastic leukaemia (Ph+ALL) in March 2020.
Her parents, Sara and Andy, set up a 'special named fund' at Children's Cancer and Leukaemia Group (CCLG) while she was undergoing treatment in 2021, to raise funds for research into Ayla's type of cancer.
Sara said: "When Ayla was first diagnosed, and we were trying to find out more about her rare type of leukaemia, it was very scary.
“We learnt that it was one of the rarest subtypes of leukaemia and also, one of the most aggressive. Only around three per cent of patients with acute lymphoblastic leukaemia are Philadelphia positive like Ayla is.
“We also found out that the best treatment for children like Ayla, Imatinib, only started to be used in 2010. Before that there was a very slim chance of cure.
“Knowing this, we instantly knew we had to do more to help, by funding research into Philadelphia positive acute lymphoblastic leukaemia."
Together with other CCLG special named funds Kayla's Rainbow Appeal, Ethan's Journey of Smiles, Ruby's Live Kindly Live Loudly Fund, Fred Bennett's Don't Look Down Fund, and The Toti Worboys Fund, Ayla's Fundraising Adventure has been part of funding pioneering research into Ph+ALL, which could help children get the right diagnosis and treatment sooner.
Although Ayla, who is now aged six, was due to finish her treatment this year, the cancer returned.
She has now had a successful bone marrow transplant and doctors are monitoring her to see if any cancer is left.
Despite undergoing treatment, Ayla has been very involved in the fundraising.
Sara said: "Ayla and her older brother Aydin have absolutely loved fundraising for CCLG. They look at the special named fund as Ayla's very own charity.
“From small bake sales to fun days, they really enjoy being involved and are always making suggestions for what we can do next for 'Ayla's charity'.
“We are all absolutely over the moon to be a part of something so incredibly life changing. To fund research that will help patients at the point of diagnosis, which is the hardest and most overwhelming time, is truly something special to us.”
Dr Gillian Horne, of the University of Glasgow, is leading the important new research that aims to understand more about a new variant of Ph+ALL.
Some patients with this disease don’t respond well to treatment, and doctors think this may be because their cancer is more similar to another type of leukaemia, called chronic myeloid leukaemia (CML).
This cancer needs very different treatments to Ph+ALL, which could explain why these patients don’t respond as well to standard treatment.
Dr Horne said: “We want to understand more about patients with this new variant of Philadelphia positive acute lymphoblastic leukaemia, called ‘CML-like Ph+ALL’.
“This is hugely important because, if we find that there are patients in this group that don’t do as well with standard treatment, we can make sure to use more intensive treatment approaches from the start.”
Dr Horne’s team will look at cancer samples from patients with Ph+ALL that behaves like CML to find out how it develops, and whether there is a way to diagnose it sooner.
This would mean they could start stronger treatments sooner, giving them a better chance of killing the cancer.
Dr Horne said: “There is still so much to know about this variant of leukaemia and our project will take us one step closer to uncovering the intricacies of this disease.
“Our ultimate aim is to improve patient outcomes, particularly for children that don’t respond as well to current standard treatment approaches.
“We are so excited to started and are truly grateful for all the funds’ support, which allows us to continue this important work.”
Sarah Evans, CCLG research manager, said: “Dr Horne’s project is a great step forward for children with rare types of leukaemia.
"One of our missions at CCLG is to make sure that every type of cancer, no matter how rare, has research into it that will help create a brighter future for these patients.
“We couldn’t fulfil this mission without our amazing special named fund families, and we are so grateful for the Foster family’s fundraising.”
Find out more about Ayla’s fund at specialnamedfunds.cclg.org.uk/aylas-fundraising-adventure
For more information about the project visit cclg.org.uk/our-research-projects/new-type-of-acute-lymphoblastic-leukaemia
