Chanelle Midgley and Daniel Davis found out last month that their young daughter Avarni-Mae has T Lymphoblastic Lymphoma Leukaemia
Avarni-Mae, who has been diagnosed with T Lymphoblastic Lymphoma Leukaemia at just two-years-old(Image: Chanelle Midgley)
A family from Sunderland have shared their emotional story, after their two-year-old’s ‘heart-breaking’ diagnosis of rare cancer. Chanelle Midgley and Daniel Davis found out last month that their young daughter Avarni-Mae has T Lymphoblastic Lymphoma Leukaemia.
The quick-spreading form of leukaemia, coupled with a very rare gene fusion, has been described by Chanelle, 35, and Daniel, 34, as “the worst news ever”. Avarni-Mae, born in August 2023, was an energetic, fun-loving girl before she became ill with the condition in January.
Chanelle, of Hetton-le-Hole, said: “Avarni-Mae has been ill from the end of January, with what seemed like colds and she was struggling to breathe, sucking in air at her ribs. We were initially told that it was viral, and given antibiotics for a chest infection, in February but nothing made a difference.
“When we went to Sunderland Royal Hospital in March, they couldn’t hear much air on the left-hand side of her chest, so she got a chest x-ray, and that’s when they told us they could see a shadow. She had blood tests, and was transferred to the RVI, and it all felt like a complete blur from there.
“In Newcastle, it started being referred to as a lump and a tumour, and they said it was too dangerous to do a biopsy, because it was basically crushing her lungs, so they had to try and shrink it with steroids. We got the official diagnosis on March 26, and our world turned upside down.”
On Tuesday, the family’s sadness was compounded when, after several rounds of chemotherapy, steroids, and other medication, they found out that Avarni-Mae has a rare blood cell fusion, seen in roughly a dozen people worldwide. With that came the most devastating information, there is no cure, and their beautiful daughter had been given a timescale of 6-12 months.
Daniel said: “At first she was in good spirits, but she is just sick of being poked and prodded so much now. She looks at us with such sad eyes, as if she is saying ‘help me’, it is just horrible to see, and she is in bed all day, after always running around in the past.”
Now, Chanelle and Daniel, with support from older children Brendan, 27, Mollie, 20, Victoria, 19, and Ben-Daniel 16, are having to balance everything with looking after their other two little ones, Bella, 8, and Priya, 7. With neither parent working at the moment, fundraising pages have been set up to help lift financial burden.
Local pub The Colliery Inn is also hosting a family fun day for them on May 30, and is encouraging donations to help the family in the same way. This kind of support from family, friends, and the wider community is crucial for Chanelle and Daniel to continue doing all they can for Avarni-Mae.
Chanelle added: “This has been the worst news ever, and such a difficult time for our whole family, but our consultant has been amazing and is constantly looking for any new treatment options. We will do everything we can to help Avarni-Mae, thank you for helping us by donating.”
If you would like to donate to help Chanelle and Daniel support Avarni-Mae and the rest of their family, you can do so by donating on the GoFundMe pages here, and here. To see regular updates from Avarni-Mae, you can visit the Facebook page dedicated to her here.
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