THE parents of a seven-month-old girl who was diagnosed with a rare form of leukaemia have set up a fundraising event and hopes to spread information about the disease’s warning signs.
Seven-month-old Aila, from Bournemouth, was diagnosed with acute myeloid leukaemia (AML) when she was four months old when she had a blood test.
The shock diagnosis has left her family devastated, but mum Róisín Bee and dad Jason has set up a fundraising event this month and want to raise awareness of the devastating disease.
The 29-year-old mother said: “Aila is in hospital for seven months as an inpatient to have chemotherapy.
“She also had an intensive care stay where doctors told me and my family to say goodbye but luckily, she pulled through. It was very touch and go in the beginning.
“This is the first year of her life and she should be doing all her firsts; but instead, she is doing it in hospital.
“She will probably learn to walk in hospital. Her first year has been much tougher than it should have been.
“For us as a family we have not been able to return to work, we’ve got a flat that we still have to pay bills on whilst we essentially live in a hospital.
“It’s had a huge impact on what should have been the best year of our lives.”
Róisín wants parents to understand the signs to look out for with AML. With Aila, this included lumps and bruises appearing, struggling to gain any weight and sleeping a lot more than usual.
“Everyone always said ‘oh, you’re lucky she’s sleeping’. Because she was a tiny baby nobody took us seriously, so we had to really fight for this diagnosis,” the mother added.
To help pay for Aila’s needs in hospital and the couple’s expenses getting to and from hospital, Róisín and partner Jason, 31, have set up Aila Fest, an all-day event at Bear Cave in Holdenhurst Road, Bournemouth on Saturday, October 15.
It will be musical and there are 15 acoustic acts in the day and, after 6pm, four live bands. The family-friendly event will have activities for children, sweets and milkshakes, stalls, crafts and more.
The family is also in the process of setting up a charity called Aila’s Sunshine.
Róisín added: “We’ve already bought a guitar for one for the boys on the ward. We want to supply musical things, such as instruments, tickets to music shows or headphones, to children on the ward.
Aila Fest is at Bear Cave in Holdenhurst Road from 10am. Tickets can be found at https://www.eventbrite.co.uk/e/ailafest-tickets-417634535137?fbclid=IwAR1JJjlLFTOEwbhMj6wkKHv7JZEf1OYdMiLjaJzZUj-h-XDEWETz2oSPbbs
Donations can also be made at https://www.gofundme.com/f/r3dkdq-aila?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer
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