Fundraiser for Worcester baby with rare liver disease

Worcester News: Eight-month-old Nancy Evans suffers from the rare genetic liver disease known as Alpha-1 Antitrypsin Deficiency Eight-month-old Nancy Evans suffers from the rare genetic liver disease known as Alpha-1 Antitrypsin Deficiency

THE FAMILY of a baby suffering from a rare liver disease is holding a fundraiser to try to find her a cure.

When Joanne Evans gave birth to her baby Nancy she thought she was a normal healthy baby, but a month later they were told she had Alpha-1 Antitrypsin Deficiency (Alpha-1 ATD) - a genetic disease leading to liver and lung damage.

Mrs Evans, of Church Road, in Merrimans Hill, Worcester, said: "It's hard having a baby but to find out they're ill is even harder.

"Everything was fine when she was born, we were told she was healthy and fine but she had slight jaundice but the doctors said that it could happen and to put her in sunlight.

"A month later, we were in the garden and noticed her eyes were still slightly yellow. We saw the health visitor the next day and got sent to the hospital for blood tests and it all snowballed from there."

Now eight-months-old, Nancy had to stay at Birmingham Children's Hospital for two weeks when she was diagnosed and has to keep visiting for regular check-ups to make sure she is growing and developing correctly and to see how the disease is progressing, as not much is known about it.

For Nancy, the condition means her liver does not get rid of fats and it produces an unusual protein that becomes trapped in the liver, potentially causing liver damage, and spreading to her lungs.

Lynn Evans, Nancy's grandmother, said she could need a liver transplant at any point in her life.

She said: "If you looked at her, you wouldn't think anything was wrong but it's a condition she's got for life.

"At the moment we're lucky, she's just come off some medication, she's started to eat and sleep properly and she goes back to Birmingham every three months for check-ups, but we don't know what the future holds for her."

To help the Children's Liver Disease Foundation, the family are holding a fun day at Worcester's Guildhall on Friday, March 7, to raise cash towards potential life-saving research.

There will be raffles, tombolas, tea, coffee, snacks and prizes, which were all donated by local businesses, on offer between 9am and 1pm.

For more information on the disease or to donate to the charity, visit childliverdisease.org.

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