Ayla's Fundraising Adventure is a CCLG Special Named Fund raising money for research into Philadelphia positive acute lymphoblastic leukaemia (Ph+ALL). Ayla was three years old when in March 2020 she was diagnosed with Ph+ALL.
Her mum Sara shares her story…
On March 19, 2020, our world changed for ever. Ayla had been unwell for a couple of weeks by that point and, on that morning, she was so pale and sleepy. My husband Andy and I felt the only thing we could do was take her to A&E. After a blood test and waiting several hours, we were told Ayla had leukaemia and would be transferred to Birmingham Children's Hospital (BCH) the next morning, for further testing and treatment.
This was just a few months after her third birthday.
Once transferred to BCH she needed a lot of support to get her body ready to start chemotherapy. She had a bone marrow aspiration which tested for the type and amount of leukaemia in her body. Unfortunately, Ayla's diagnosis came back Philadelphia positive acute lymphoblastic leukaemia (PH+ALL). We were told this is the most aggressive form of leukaemia, with the harshest chemotherapy treatment plan.
This was at the start of the COVID-19 pandemic, which heightened the huge stress we were under finding out our daughter had leukaemia. As parents, we were allowed to see her in her room together over this weekend, but then the UK went into lockdown that Monday and there was only one parent allowed to visit and no siblings.
Times have been turbulent, but almost a year into her treatment, due to finish in April 2023, Ayla is doing really well. We still tiptoe on eggshells for the results of her monthly minimal residual disease (MRD) tests, but remain positive she will fight and beat her diagnosis. She’s being supported by her incredible older brother, Aydin, who has stuck by his sister’s side every step of the way.
Ayla has always been a happy, smiley, fun-loving child who loves singing and dancing. Dancing has actually been a huge factor in her recovery from being unable to walk after such high-dose chemotherapy at the very start of her treatment. She also loves to paint and do all the normal, messy things little ones do. She loves playing shops and kitchens, cooking up a storm. She loves the garden too, and also the messy mud kitchen!
Our experience has now given us a knowledge we didn't have before. We know only 3% of all leukaemia diagnoses are PH+ and that it has had the worst prognosis. Only within the last 10 years has the protocol been updated with Imatanib, and this wonder drug has shown what can be achieved with vital research. We believe Philadelphia needs more funding, which has led us to create a fund in our daughter’s name. We want to raise as much money as we can for further research into treatments for it, to increase its 80% survival rate to the 100% that it should be. Not only that, but the treatments are often so harsh and have life-changing side effects. This, too, is something we want to change.
We have lots of plans for fundraising events and I also would love to raise more awareness, especially in schools, of the signs and symptoms of childhood cancers. Our children's school and pre-school are fully supporting us, and have planned an awareness day on September 4, 2021 to coincide with Childhood Cancer Awareness Month (CCAM) and World Leukaemia Day.
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Research Projects Funded
Identifying a new type of blood cancer to improve the outlook for patients with acute lymphoblastic leukaemia
Fundraising pages
Text CCLGAYLA to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Ayla's Fundraising Adventure so that your donation is allocated to the correct fund.