A 20-month-old little girl who suffers daily discomfort, takes several medicines every day and has a constant itch on her skin, is battling an extremely rare form of liver disease.
Without medical intervention, it is unlikely that little Eleanor Wong would live past her first decade of life.
Her condition, Type 1 Progressive Familial Cholestasis, is so rare that she will one day need a liver transplant to give her the best chance in life.
Eleanor was born a healthy baby, weighing 6lb 9oz. Her parents did not notice anything unusual until she started suffering from nose bleeds at just a few months old.
After being referred for various tests, health professionals eventually came to the conclusion that it was a problem with her liver.
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Her mum Emily, 35, from East Markham said: “The whole thing is worrying, we are just taking everything one step at a time as thinking too much about it is too scary.
“It was a complete shock when Eleanor was diagnosed. No one in our family has ever had anything like this.
“My husband is from Hong Kong and I’m English and we had both given Eleanor a recessive gene.
“She went through a whole genetic screen at Leeds hospital to try and find out what was wrong.
“It took 13 weeks to get the results back – they were the hardest weeks of our lives. By that point she was eight months old when she was diagnosed with an extremely rare liver condition.”
Her condition means a protein which controls the normal balance of bile acids in her body is disrupted.
The build-up of acids causes scarring of the liver which eventually leads to liver failure and ultimately a transplant is needed.
Emily said: “Her skin often looks yellow, like jaundice, as her body can’t absorb vital nutrients. She has an itch on her skin that never goes away.
“It has affected her growth, and now she has a tube that gives her extra nutrients through her nose.
“We don’t know when she will need a new liver at the moment it’s all about monitoring her.”
Emily and her husband Daniel have to be awake while she has her Nasogastric feed through her tube between 7pm and 12pm and 6am to 8am every day.
Eleanor also needs checks at Leeds hospital every couple of months and a scan on her liver once a year.
The family are also holding out hope that there will be a clinical trial at Leeds Hospital in the coming months as only a few drug companies in the world look into this condition.
Emily added: “She’s still a very happy little baby and she’s quite strong. I think things like this make kids stronger in some ways.
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“Some days are worse for her than others, there’s just no relief for her.
“In terms of development she is only slightly behind. She can walk, but not very far as she is just not that strong, other than that her development is fine.”
Emily and Daniel are taking part in the Great North Run in September in order to raise money for the Children’s Liver Foundation.
The foundation provides support and information to families who have children with rare liver conditions.
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They also give support to families in hospital as well as offer advice and guidance.
Emily and Daniel want to raise the money to try and help not only Eleanor but also other children in the same situation.
If you would like to donate money for the cause you can visit the families Just Giving Page .
