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'Your world turns upside down': Father opens up on son's rare disease

PUBLISHED: 16:58 16 July 2019 | UPDATED: 16:58 16 July 2019

Noah Gower was born with a rare hereditary disease at birth. Picture: Contributed by James Gower

Noah Gower was born with a rare hereditary disease at birth. Picture: Contributed by James Gower

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A father has opened up about the heartbreak following his son's diagnosis with liver disease, as his family plans to raise funds for the cause.

Noah’s family are preparing for a fundraising garden party this weekend. Left to right: Emma Youngman, Noah’s auntie, Claire Gower, Noah’s mum, James Gower with Noah, Susan Andrews who is hosting the party and Gail Reynolds (James’ mum). Picture: Contributed by CLDFNoah’s family are preparing for a fundraising garden party this weekend. Left to right: Emma Youngman, Noah’s auntie, Claire Gower, Noah’s mum, James Gower with Noah, Susan Andrews who is hosting the party and Gail Reynolds (James’ mum). Picture: Contributed by CLDF

Three-year-old Noah Gower was born with Progressive Familial Intrahepatic Cholestasis type one or PFIC1 - a rare hereditary disease which can only be passed on through a genetic mutation from both parents.

PFIC1 often causes symptoms such as jaundice and itching in the first year of a child's life and can lead to a deficiency in fat soluble vitamins.

It can also cause diarrhoea, stunted growth and stature, pancreatitis, thicker skin and hearing problems. There is a one in 350,000 chance of having the disease and it can skip generations.

His father James Gower, said: "When you hear the news that your baby has a life-changing liver disease it feels very lonely, scary and your world is turned upside down,"

The 33-year-old from Kessingland said "not many people" know about liver disease, and it wasn't until Noah was diagnosed that he became aware.

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"The only reason we know about it is because of Noah, but 20 people are diagnosed with liver disease a week and more people are diagnosed with liver disease than leukaemia," Mr Gower said.

Hoping to raise funds for Children's Liver Disease Foundation (CLDF), his great-grandmother Susan Andrews, from Worlingham, will host a garden party this Sunday (July 21).

Mr Gower said: "Noah is doing really well, he takes his medicine every day and is progressing like any other child, but we want to know that CLDF will be there to support him as he grows up.

"They don't know what will happen with Noah. He could stop growing, his speech could stop, his height and weight could stop - even with a liver transplant he still has the disease."

The garden party for Children's Liver Disease Foundation will take place at 16 Hillside Avenue, Worlingham from 10am to 3pm.

There will be second-hand stalls, a raffle, refreshments and a guest appearance from Paw Patrol character Marshall.

"We're crossing our fingers for sunshine and hoping that as many people as possible will come along to support a cause which means a great deal to our family," Mr Gower said.

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