Alex and Sam's story: 

Reid and his twin brother Eldon were born in August 2015. Whilst Eldon thrived Reid struggled to gain weight, was constantly hungry, had white poo, a swollen tummy and very skinny limbs and his jaundice was getting worse. At his 6 week check these symptoms were explained to the GP but they were not concerned and suggested we monitor him for a further month or so. By 9 weeks he was very yellow and not doing any better so he was taken to hospital and then transferred to Birmingham children's hospital where a scan diagnosed biliary atresia. 

This is a very rare liver condition which affects one in approx 16,000 children in the UK and very little is known  about what causes it. 

On the day he turned 9 weeks old Reid underwent a 6 hour surgical procedure called a "Kasai" which essentially restructured his digestive system in order to minimise the damage to his liver.

The procedure itself was a success but because he was diagnosed so late the damage to his liver was already quite advanced so now it is a waiting game to see if it works long term.

Since the surgery he has suffered many related complications and complaints including an enlarged spleen and a surgical hernia. He is already well known at Kettering hospital as is his twin and it has become his second home!

Reid faces an uncertain future and it is highly likely he will need a liver transplant at some point. Nearly half of all infants who have had a Kasai require a transplant before they turn 5 and 85percent of all children with biliary atresia need a transplant by the age of 20.

For now Reid is doing well for a baby with his condition and the support he and his family have received from CLDF has been amazing. They provide all the literature around the condition to the families affected but also to the hospitals and GPs.

For the best possible chance of minimal liver damage babies need to be diagnosed and have the Kasai before 6 weeks old but there is not enough awareness around the condition and, as with Reid, it is often missed and symptoms either not recognised or misdiagnosed.

CLDF have created an app to assist health visitors with looking out for the symptoms and have also provided literature to educate GPs. In fact, the paperwork they provided to Reid's GP has already led to them implicating changes to look out for the signs of childhood liver disease.

The charity are not widely known of due to liver disease in children being so rare so need more funding to help them continue their great work raising awareness and helping families of "liver babies".

We will be doing a number of fundraising activities to raise money for the charity's amazing work, as appreciation for all of the emotional and physical support the charity have and continue to provide Reid's family with. 

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