An Irish mum whose son suffers from a rare genetic disorder has discussed the challenges she faces every day while caring for her son.
One-year-old Hagan Nolan has cystinosis - which over time will crystallise his cells and destroy his organs.
There is only a one in a million chance of both parents transferring the condition to their child, and there are currently just eight patients with it in the whole country.
Hagan's mum Donna has launched a fundraising effort through Cystinosis Ireland.
Speaking to Nadine Maloney, Donna explained "we can't say we wish this didn't happen, because then we wouldn't have Hagan. We just need to find a cure".
Donna says it's very likely a cure can be found, because "it's just one thing that's wrong in the cells". However with only 2,000 kids worldwide with the condition, there is little investment in it.
"That's basically the reason there's not a cure yet - it's all about money," she added.
Speaking about the fundraising efforts here, she says Cystinosis Ireland has "raised €1.4 million since 2003. We couldn't believe it. It's a tiny charity, with ten people in it - parents just like us - and they're raising all this money to find a cure for their children, and basically for our child.
"We need to help these people. We can't just sit here and stay in our house and keep crying about it. We're still going to cry - we just have to cry - we just need to help them".
In an emotional interview, Donna described how Hagan was diagnosed, and what life is like living with a baby with cystinosis.
"There's this medicine that delays everything, but there's nothing they can do to stop it," she said.
"There's just so much medication, and it's throughout the day and night. It's tough. It's really tough on all of us. We have a whiteboard with everything we have to do, day and night, constantly".
Donna says they're now lucky they can bring Hagan out for an hour in the mornings, as he loves being outside. "It got to the point where he couldn't be a little baby anymore, that he was just this little patient," she recalled.
"He just kept puking constantly. Now the vomits are down to two or three times a day, and that's just brilliant. He's putting on weight, which is amazing - it's the first time in six months".
You can listen to the full interview via the podcast below.
You can donate €4 to Cystinosis Ireland by texting MINI to 50300
