My dear nephew 6 years of age and needing a new liver

[a_undre]

Hello everyone

My lovely nephew who's 6, has a rare genetic disorder. He unfortunately makes too much LDL cholesterol, which can lead to heart and cerebral issues. At the current rate he could have a significant life event before he's 10.

My sister is distraught and having difficulty deciding on the correct pathway. He currently has a weekly session of apherisis, which is like dialysis however it removes the LDL in the blood. The first results of which look promising bringing his levels down to near normal.

Now the prospects for his future are : either continue the apheresis until a new drug treatment becomes available. That could be a decade, few decades, never... it is a risk. The other option being liver transplant (the liver produces around 80% LDLs), hence transplantation would effectively cure it.

My sister is at a crossroad and the decision seems very hard. What are the long term survival rates? what are the complications long term? what meds are needed and for how many years?

I would like any long term transplant patient to give their experiences and how the whole situation unfolds.

My kindest regards

[AyrshireK]

You might want to connect with the Children's Liver Foundation at :- childliverdisease.org/ as they will have more relevant information as regards the transplant procedure in children and children's liver disease in general.

The British Liver Trust is more aimed at adult patients and their issues can be very different than those of young children - procedures and protocols are also very different.

The Children's Liver Disease Foundation also have a Health Unlocked page which will perhaps be a more appropriate place to seek help regarding your little one.

To find the CLDF on Health Unlocked go to the My Communities tab at the top of the page and using the drop down menu got to browse communities and you should be able to find the CLDF page.

I really wish you and your little nephew and all the family the very best of luck for the future.

Katie xx

[AndreaWilson_Founder]

If you wouldn't mind emailing me directly, I would love to connect you with someone who has had two liver transplants. There is always a risk of rejection with any organ transplant, but given what you have stated above, a transplant may be the best option. Always seek a second and sometimes third opinion.

Sincerely, Andrea Wilson

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