I would like to share my sons liver journey to raise awareness.
My son is Rueben Kiernan age 3. Rueben has extremely rare liver disease called giant cell hepatitis it so rare we have never found anyone else who has it. Rueben also has lung and blood diseases.
He started of with blood disease then when he has 18 months. He went into acute liver failure he turned yellow, stopped eating, was vomiting, his blood wasn’t clotting, had buildup of fluid, reduced brain function. He was lifeless. He deteriorated within hours. They took him to ICU and put him on life support. He was in full liver failure. We were told he might die.
They got onto Kings in UK to try get him liver transplant but he was to sick to be moved, so between both hospitals they decided to try some treatments on him.
They gave him 5days of plasma exchange, and because giant cell hepatitis is just like autoimmune hepatitis (which they thought he had). Then they tried immunosuppressants to try stop the antibodies attacking his liver. Over the next few days they tried lots of other treatments on him and they saved him and his liver (there is still some damage done) and they said if this happened again he might not be so lucky. He then went for biopsy and was diagnosed with giant cell hepatitis a condition were his own antibodies were attacking his liver, then one year later it stated to attack his lungs so by the age of 3 had autoimmune diseases in his blood, liver and lungs. Rueben wil need treatments all his life to suppress his immune system and to try to stop antibodies from attacking his organs.
Rueben has spent so much of his life as a inpatient. He has had 13 operations, 40 blood transfusions, had plazma exchange,been on life support, had blood poisoning, had blood clots, had drain on his lungs, took reactions to medicines that he needs, had pneumonia, been needing 24hours oxygen and one stage, had hundreds of iv treatments and he is only 3, and even with all this going on he is the happiest bravest little boy u could met.