A GARNDIFFAITH mother is trying to raise awareness of her son and nephew's genetic condition.

Nicola Hillard's youngest son Lucas, five, suffers with a disorder which affects his metabolism and prevents his body from breaking down food and converting it into energy. His cousin Jamie McDade, who is four, also has the same condition.

The boys have type 9 Glycogen Storage Disorder (Phosphorylase Kinase Deficiency). The condition means they are unable to break down glycogen into glucose, which is a form of sugar and the body's main source of energy.

But with Lucasand Jamie the glycogen, the stored form of glucose, remains in excess in their bodies mainly on their liver and muscles.

Mrs Hillard 31, said: "The condition is very difficult to understand and there doesn't seem a great deal of information available to parents in the UK. There is much more research in America, and sufferers are provided with corn starch and protein powder, to help with muscle gain, but here we are just told to make sure our child maintains a good diet, which is advice given to any parent.

"Lucas does have a good diet, but you can clearly see his liver swelling and it looks like he has a pregnant belly.

People need to be told more so they have a better idea of dealing with it.

"We have two sufferers in our immediate family as Lucas's cousin Jamie, who is four, also has the same condition.

Both Lucas and his cousin Jamie attend Victoria Primary School in Abersychan.

Doctors have told Nicola and her husband Lee, 36, that Lucas will not be able to take part in physical activity and if he ever needs anaesthetic, it could cause problems.

Lucas's condition was only discovered because Nicola kept taking him back to the doctors when he was younger, as he was not reaching any of his targets such as walking.

Initially doctors thought Lucas was just a slow developer but DNA testing discovered Nicola is a carrier of the condition and has a 50/50 chance of passing it on. Her eldest son Kyran, seven, did not inherit GSD.

Lucas has to see a paediatrician every six months and a liver specialist every year.

katey.pigden@gwent-wales.co.uk