THE parents of a baby girl who was diagnosed with cancer when she was 19 days old have now been told she has a serious liver condition and will need a transplant.
One-year-old Macie Allen, of west Hull, is responding well to treatment for neuroblastoma – a rare cancer that affects about 100 children each year in the UK.
In January, doctors at Leeds General Infirmary told her parents, Helen Shaw and Mike Allen, that chemotherapy had worked and tumours on her liver had disappeared.
However, this month they were given the devastating news that Macie will need a liver transplant after being diagnosed with progressive familial intrahepatic cholestasis (PFIC), which causes liver disease.
Miss Shaw said: "We had some really gutting news.
"The liver team at Leeds have had some results back from the genetics in London when they took some biopsies from Macie's liver last year.
"They have found that Macie carries a gene, progressive familiar intrahepatic cholestasis, which means she has liver disease. She was born with it."
PFIC typically leads to liver failure and it is estimated to affect one in 50,000 to 100,000 people worldwide.
Miss Shaw said: "Macie's liver is deteriorating.
"She will definitely have to have a liver transplant, whether that be next year or in ten years' time.
"It is heartbreaking for us as a family but at the moment her treatment seems to be working and the hospital will keep a close eye on her."
Macie will now have extra blood tests every three months as well as regular vitamin level checks.
She will also have an ultrasound on her liver in June to see how she the organ is faring.
Although the chemotherapy has destroyed Macie's tumours, she will not officially get the all-clear for another five to seven years.
She will continue to have check-ups every three months at Leeds General Infirmary.
"Macie doesn't deserve this after all she has gone through," Miss Shaw said.
"Her life is going to pan out to be so different and who knows when this transplant is going to happen?"
Macie has also been diagnosed with portal hypertension.
This is an increase in the blood pressure in the portal vein, which carries the blood from the bowel and spleen to the liver.
It has been caused by scarring on her liver from the tumours.
Miss Shaw said: "We've just got to keep an eye on her. The chemotherapy has also given her varices (dilated blood vessels) on her oesophagus.
"When she starts nursery, a care plan will have to be done to make sure staff are aware of these conditions."
Miss Shaw said the family has been overwhelmed by the support they have received from friends and family, as well as strangers.
She said: "The support we have received from members of the public and complete strangers who have seen Macie's story in the paper is just overwhelming. We can't thank people enough."
Just like any one-year-old, Macie loves to play with her toys and watch her favourite television programme, Bing.
Miss Shaw said: "Despite everything she has been through, Macie still makes us laugh.
"She is still here at the end of the day and is our little miracle."
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