The faulty cancer gene that’s a ‘ticking timebomb’ for girl

The Oxford Times: Eoin and Charlene Davies with their 19-month-old daughter Avah. Picture: OX64635 Simon Williams Buy this photo Eoin and Charlene Davies with their 19-month-old daughter Avah. Picture: OX64635 Simon Williams

WHEN little Avah Davies was diagnosed with a cancer so rare doctors could not put a name to it, her parents thought things could not get any worse.

But then Eoin and Charlene Davies learned their daughter is carrying a faulty gene – a ticking time bomb – which means she could develop even more types of cancer.

Just over a year ago, Mrs Davies, 30, from Rookery Way, Bicester, felt a lump on the right side of her baby daughter Avah’s upper body.

Two weeks on, after an inconclusive visit to the doctors, another GP felt something she could not identify and immediately sent Avah to the John Radcliffe Hospital.

After several days of tests, doctors confirmed that the then six-month-old Avah had a tumour attached to two of her ribs.

Eoin Davies, Avah’s 51-year-old father and full-time carer, said: “Specialists in Oxford were unable to identify the cancer as they had never come across it before.

“One consultant said it was a high grade sarcoma but couldn’t put a name to it.

“Even a group of experts from around the world attending a seminar in London were stumped.

“Time was ticking by and we were getting anxious. We knew it was a very rare cancer but we needed to know if anything could be done.”

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While an expert was sought who could identify the cancer, doctors in Oxford started Avah on a course of chemotherapy. But the treatment did not shrink the tumour.

Mr Davies said: “At first, doctors said operating was too dangerous, but that became her only chance and Avah had successful surgery in April last year to remove two ribs and the tumour.”

Doctors recommended a course of more intensive chemotherapy treatment.

But blood test results then showed that as well as having a rare cancer, Avah has a fault to a gene that normally stops cells from forming tumours. The faulty gene increases her risk from other cancers.

Avah, now 18-months old, has a brother, Miles, 20, and a sister Jaylan, seven, and is currently free of treatment, but is screened regularly.

While her cancer has still not been identified, for the purposes of treating her, doctors are dealing with it as a high grade sarcoma.

Her hair is growing back and she is feeling well.

But Mr Davies said: “We are still in a dark place because we have been told there is a high chance of her getting cancer again, for which nothing can be done.

“Avah is not old enough to know what is going on and she smiles all the time.

“Our beautiful daughter has been a real battler.

“She has been through some very tough times but she just gets on with it.”

Now the young girl has been awarded a Cancer Research UK Little Star award for her bravery.

Helen Johnstone, Cancer Research UK’s spokeswoman for Oxfordshire, said: “Nobody could fail to be moved by her story.”

LITTLE STAR AWARDS

  • The Little Star Awards are open to all under-18s who have cancer or who have been treated for the disease in the last five years.
  • Every child nominated for a Little Star receives the accolade and siblings of Little Stars also receive a special certificate in recognition of their support.
  • To nominate a Little Star or to donate to Cancer Research UK’s work, visit: cruk.org/littlestar

 

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