As little Ava excitedly opens her Christmas presents on Christmas morning, her devoted parents Charlene and Marc Le Blanc will be treasuring every magical second.
Every parent loves to see their children squealing with excitement and joy, but for Charlene and Marc every Christmas feels like an extra special gift - as Ava, now eleven, was diagnosed with a brain tumour as a toddler and was not expected to reach the age of five.
Ava was just two-years-old when she told her mum, Charlene, that she felt dizzy, like the room was spinning. Over the next few days Ava became sick, lost her sense of balance and started holding her head tilted to one side.
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Charlene, 37, who lives with Marc, 37, Ava and their other two children Leo, seven, and Esme, three, in Bury, knew straight away that something wasn’t right and took Ava to A&E where a CT scan revealed a mass on Ava’s brain. She was referred to Royal Manchester Children's Hospital immediately for an MRI scan that showed the mass on her brain was a tumour.
Tax manager Charlene said: “Nothing prepares you for the shock of getting news like that. We were told Ava had a 20 to 30% chance of surviving five years or more." Charlene, who was less than 12 weeks pregnant with son Leo, seven, at the time, says: " We were heartbroken.”
Five days later, Ava went into surgery to have the tumour removed. The operation took around ten agonising hours and revealed that the tumour was cancerous - a devastating diagnosis for her distraught parents.
Ava stayed in hospital for most of the next eight months receiving five gruelling and debilitating cycles of chemotherapy, followed by high dose chemotherapy and a stem cell transplant.
During that time Ava had another MRI scan that showed another small mass in her brain. The doctors weren’t sure if it was left behind during the previous surgery or if it was a new tumour and little Ava was rushed into emergency surgery.
During this second operation it was revealed there was still a small bit of tumour left, and so Ava was immediately taken back to theatre to try and remove it. An MRI scan a few days later showed the tumour was now all gone. It was amazing news for her thrilled family and Ava remained tumour free for two years.
But then, one devastating day, shortly after she started reception class, Charlene noticed that Ava was tilting her head to the side again. Crushed, Charlene says she just knew the tumour was back. She rushed Ava to A&E where their worst fears were confirmed.
Once again Ava had surgery, and once again, it was revealed there was still a last bit of tumour remaining. Ava was immediately taken back to surgery to try and remove this piece. However, an MRI scan the following day showed there was still some of it remaining. The family agreed to take Ava to Alder Hey Children’s Hospital – 60 miles from their home – to use the specialist iMRI equipment there that could better pinpoint the remaining bit of tumour.
The family say it was difficult having Ava so far away from home, especially now she had a little brother at home who needed caring for too. But this time the surgery took half the time and Ava recovered much quicker.
Ava was able to go home a week later, however, during the next part of Ava’s treatment, craniospinal radiotherapy, a further MRI scan showed the tumour had returned again.
Charlene says: “Ava is a happy, cheerful little girl who always has a smile on her face. We were devastated when we learnt that the tumour had returned. Following more brain surgery and gruelling craniospinal radiotherapy, we are hopeful that the remaining tumour, which is now so small, will continue to shrink and that she won’t need any further treatment."
In fact, the family are now hopeful the tumour may just be scar tissue, although it remains an ever-present worry. Despite all she has been through, Charlene says her daughter is always positive.
"Ava needs regular monitoring scans, but she never complains or moans, she’s so brave, she just gets on with it," Charlene says. "It’s all she’s ever known. She is a very inspirational young girl."
In fact, Ava is so inspirational, on a recent visit to Royal Manchester Children’s Hospital, Peter Done, Founder and CEO of Peninsula Group, who have raised £2 million for the hospital, met her and was so dazzled by Ava, who shares the same name, age, and personality traits as his own granddaughter, decided then and there to pledge a further £1 million to their appeal, running through to 2023.
The money raised from this new campaign will go to the charity’s general fund, supporting the thousands of children just like Ava who are cared for at Royal Manchester Children’s Hospital.
Ava has been left with side effects from her treatment, including growth hormone deficiencies - which make her smaller for her age - and cognitive learning difficulties. She also has autism - but her parents are just grateful she is still with them.
Charlene says, like every Christmas, this year will be very special, as every year they did not expect to be able to spend with her is a year treasured. Charlene says: "Ava really loves Christmas and it is a really special time.
"We are just so grateful that she is here. We have gone through everything we have to have her here with us this Christmas time."
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