Pharmacuetical companies accused of refusing to invest in a cure

An Irish mum whose son suffers from a rare genetic disorder has accused pharmaceutical companies of refusing to invest in a cure.

One-year-old Hagan Kavanagh has cystinosis which over time will crystallise his cells and destroy his organs.

There's only a one in a million chance of both parents transferring the condition to their child and there are currently just 8 patients with it in the whole country.

Hagan's mum Donna has launched a fund raising effort through cystinosis Ireland because she has said medical firms are unwilling to help.

“We can’t say we wish this hadn’t happened because then we wouldn’t have Hagen we just need to find a cure,” Ms Kavanagh said.

“Basically a cure can be found because it is just one thing that is wrong in the cells, but there is only 2,000 kids worldwide with this, so large pharmaceutical companies are not going to invest in it because they basically won’t get their money back and it is so rare and that is basically the only reason there is no cure yet, it is all about money.”