Have you heard of it? Probably not because its extremely rare and incurable. And a sweet little 21 month old Auckland boy called Jethro Morrow has it. This is how his facebook page explains it:
There is no cure, and no treatment guaranteed to help him survive. It is just trial and error to keep him stable as this condition is so unpredictable and spontaneous. 60% of children die within the first year of diagnosis. The complications associated with this illness are
• Kidney failure
• Seizures/Neurological problems
• No response to supportive treatments
• Return of HUS even after kidney transplant occurs
• Severe Hypertension (high blood pressure)
For Jethro to have a chance at a long life they need to get him onto a drug Soliris, one of the world's most expensive drugs which is not guaranteed to work but will give him a shot and a chance to live a life that's more stable. The biggest hurdle however is that it costs $500,000 yearly, and he would need to be on it for the rest of his life. So far any application for funding has been rejected based on the fact its an ongoing expense.
Considering this is a rare rare disease and this beautiful boy is one of the youngest in the world to get this it is sad they cannot get funding for this. So Jethro's family need our, the great kiwi public's, help.
Here's an article from the Herald this week, and here's his facebook support page. Please read the article to find out more and anything you can do to help or give then please do.
The account to donate to is:
The Jethro Morrow Health Trust
38 9012 0102064 00