Billary Artresia Awareness and supporting families
Donation protected
Our little boy Leonidas had biliary altresia, it is a liver disease where the bile ducts become blocked and the bile can't flow through properly. Leo became very jaundice and at his worst point he had white soiled nappies. we only found out when he was 11weeks it was a total shock, it went very quickly from going to A&E because he wouldn't stop being sick to being sent in an ambulance to Oxford on life support.
It was the scariest time in our life, but trying to keep strong for Leo. Going home to get our stuff to go to Oxford with no Leo in our arms broke our hearts.
Leo had a kasai operation where they attached part of his intestine to his liver in the hope that bile will flow through. Frequent trips to the hospital and everyday worrying was our life. One thing that I've learnt is that there is a test at 3 weeks which can be carried out to find out what type of jaundice your baby has, this is something I never knew existed. If I was more aware I would have pushed for a test for Leo, as they normally operate on babies younger than Leo. We hoped the operation would be effective if not the next step for Leo was to have a liver transplant. We want to make people more aware of this rare illness as knowledge is everything. The earlier a baby is operated on they have more of a chance of growing up with their own liver. Sadly for us we didn't have a happy ending and Leonidas died in November 2019.
This is just our story, however we met many other families who have been through something just as traumatic and this is an illness more people need to be made aware of, because it is so rare you would never expect it could happen to you.
We are currently in the process of setting up our own charity in Leonidas name, and all proceeds will go forwards raising awareness and helping families who are experiencing the similar situations.
Please share to raise more awareness thank you! Victor and Justina
It was the scariest time in our life, but trying to keep strong for Leo. Going home to get our stuff to go to Oxford with no Leo in our arms broke our hearts.
Leo had a kasai operation where they attached part of his intestine to his liver in the hope that bile will flow through. Frequent trips to the hospital and everyday worrying was our life. One thing that I've learnt is that there is a test at 3 weeks which can be carried out to find out what type of jaundice your baby has, this is something I never knew existed. If I was more aware I would have pushed for a test for Leo, as they normally operate on babies younger than Leo. We hoped the operation would be effective if not the next step for Leo was to have a liver transplant. We want to make people more aware of this rare illness as knowledge is everything. The earlier a baby is operated on they have more of a chance of growing up with their own liver. Sadly for us we didn't have a happy ending and Leonidas died in November 2019.
This is just our story, however we met many other families who have been through something just as traumatic and this is an illness more people need to be made aware of, because it is so rare you would never expect it could happen to you.
We are currently in the process of setting up our own charity in Leonidas name, and all proceeds will go forwards raising awareness and helping families who are experiencing the similar situations.
Please share to raise more awareness thank you! Victor and Justina
Organizer
Victor Frampton
Organizer
England