Nico's transplant journey & family help fund

Hello my name is Emma and my nephew Nico was diagnosed at 5 years old with Autism and a learning disability. This had a massive impact on my sisters family, to add to the amounting difficulties at this time it was discovered that he also had some complex medical difficulties that we had not been aware of.

It started with an enlarged liver and spleen and he was sent urgently for investigation.

His care under King’s college Hospital started immediately and after undergoing a biopsy of his liver and numerous other tests, scans and investigations it was found he had been born with congenital hepatic fibrosis (liver disease) causing scarring of the liver.

What this meant for Nico is that blood cannot flow through his liver efficiently. He cannot filter his blood and the pressure caused by this has caused an enlarged spleen and Portal Hypertension which means he has little or no immune system or platelets in his blood.

Nico cannot stay awake for very long periods of time due to the high toxins in his blood and spends all his time at home in his bed.

Nico and his family have bravely lived with this diagnosis and the many operations and invasive procedures for the last 10 years. Which often means splitting their family up and Nico and my sister having to spend lots of time away from the family and their support network while attending Hospital appointments and during long Hospital stays.

Subsequently many more diagnosis have become apparent and the news of Nico also suffering with Polycystic Kidney Disease, A Congenital heart defect and Hepatic encephalopathy all complications that added to his already difficult journey.

This has meant Nico has been and is still shielding due to Covid – 19 and for over 2 years has been isolated and unable to go to school.

Devastatingly, we have now reached a huge milestone where a Liver Transplant is needed , blood is not reaching all areas of Nico’s liver and it is deteriorating rapidly.

As well as looking for a living liver donor and managing all the difficulties Nico’s facing. We are hoping to make this time a little easier on my sister, brother in law and Nico's little brother.

Costs covering hospital stays, equipment needed for Nico’s recovery and to provide Nico with safe scenarios and outings so he can get back to living is what we are working towards.

We are trying to make this part of their journey more manageable.

We wish we could take this away from Nico, but if all we have in our power is make his journey more comfortable and put a smile on his face. That would be priceless.

This deserving, caring beautiful soul needs us! Please help by raising awareness and funds . We all have the power to help even just by sharing his story.

#nico_transplant_journey