An 11-week-old baby from Lichfield has been diagnosed with an extremely rare and aggressive form of cancer, leaving her family heartbroken and fundraising for potential treatment abroad.
Little Freya Charles was diagnosed with grade four Atypical Teratoid/Rhabdoid Tumour (AT/RT) on June 19, just weeks after being rushed to Birmingham Children's Hospital. Her aunt, Katie Charles, described the family's shock and devastation as they learned the diagnosis.
Three Surgeries in Three Weeks
Freya has undergone three surgeries in the span of just three weeks. The first was a nine-hour operation to remove 80 per cent of the tumour, followed by procedures to drain fluid from her body and insert a tube for chemotherapy. According to Brain Tumour Research, AT/RT is an embryonal tumour that develops from stem cells that helped form the embryo but remain active in the brain after birth.
Katie Charles said: 'She could have been crying in pain and yet we wouldn't have known. We were so blissfully unaware looking at a pretty baby and thinking her head's just a bit warped.'
Initial Signs Missed
The family initially thought Freya had flat head syndrome, but a routine maternity session in mid-June revealed her head had grown three centimetres in days. Medical professionals urged parents Adam and Lydia Charles to take her straight to hospital. Katie explained that Freya's eyes had started to displace, she appeared vacant, went cross-eyed, stopped smiling, and her hearing was affected.
'A lot of the stuff now has started to click, now we have had a proper diagnosis. We sort of could see some of the signs, but if we had medical training, we might have seen it earlier,' Katie said.
Lifelong Fight Ahead
Freya will continue chemotherapy, but the treatment stunts growth, meaning she will fight the cancer for the rest of her life even if she goes into remission. The current treatment plan is the primary option, but if a secondary plan is needed, Freya may require treatment currently being trialled in America and Canada.
Katie started a GoFundMe page to support her brother Adam and partner Lydia, who are unable to work due to Freya's condition, and to prepare for potential overseas treatment. 'My oomph now from the fundraising side of things is preparing for the unknown and that possibility that we would have to try and get them to where that treatment is accessible,' she said.
'Heartbroken' Family Raises Awareness
Katie described the family as 'heartbroken', saying: '[Freya] hasn't even experienced life yet. She hasn't been outside for three weeks. She hasn't experienced anything yet, and she's fighting for her life.' She hopes sharing their story will raise awareness of AT/RT symptoms, so other families might spot signs earlier.
Donations to the GoFundMe page are supporting the family through this difficult time.
