The lively 16-month-old from Chailey has Hirschsprung's disease, a disorder he was born with affecting the nerve cells in the bowel.

At just eight weeks old he had to undergo a critical six-hour operation to remove 15cm-20cm of his bowel.

Hirschsprung's affects the ganglion nerve cells in the bowel which control the muscles essential for normal functioning.

The operation was successful but Nathan remains at high risk from any stomach bugs or other infections.

Nathan has spent much of his brief life so far in and out of hospital and has to endure extreme pain at times.

For mum Lisa, 25, from Chailey, life is now looking more positive and through trial and error she has found more effective ways of treating the condition that suit Nathan.

Lisa, of Gradwell End, now wants to raise awareness of this 'secret disease' that few people were prepared to talk about and to raise funds for vital stem cell research.

Lisa said: "Nathan is one of the luckier ones because a lot of people have to have a colostomy bag all their lives."

Lisa has found parent support group, the Hirschsprung's and Motility Disorders Support Network a lifeline at www.hirschsprungs.info.

On November 21 Lisa Urry and her friend Lisa Williams are holding a school disco and killer karaoke night from 7.30pm with a raffle and handyman auction at the Kings Head pub in Chailey to help to fund ground-breaking research. Children will be allowed in the bar until 9pm. All proceeds from Nathan's School Disco will go to the Alder Hey's Imagine Appeal or donations can be made via www.justgiving.com/lisaurry1

Read the full story in the Mid Sussex Times

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