THE parents of a boy born with a rare genetic condition are bidding to change their son’s life with radical surgery abroad

Karly Herriott and Luke Heath are aiming to raise funds for their son Loui Legend, 3, who was born with the rare genetic condition Treacher-Collins Syndrome, to receive life-changing surgery at Seattle Children’s Hospital.

The condition causes severe deformities in the ears, eyes, cheekbones, and chin and means Loui must eat and breathe via a hole created in his neck, known as a tracheostomy.

The surgery, not available on the NHS, will reconstruct Loui’s jaw and hopefully remove his tracheostomy, which would allow him to breathe unaided, speak, swim and learn to eat.

Loui’s mum Karly said: “The care and responsibility involved in looking after his tracheostomy is phenomenal and because of it he requires 24-hour care.

“If his tracheostomy was to come out or get blocked, it would be seconds before he would struggle to breathe, putting him in danger of brain damage or even worse.”

Describing the surgery’s desired results, Karly said: “It’s an absolute dream.

“He misses out on so much and this operation, if successful, will totally transform his and our lives.”

However, the surgery will cost £214,000, and so Karly and Luke have been campaigning to raise funds for the life-changing operation.

Karly and Luke have already raised more than £33,000 via Loui’s gofundme page, which can be found at uk.gofundme.com/louilegend, but are still far short of their target.

Both keen bikers themselves, Loui’s parents have organised a bank holiday motorbike run to raise funds for the surgery on August 27, which has gained support from motorbike groups including UK Zedheadz and the SXHD Sussex and 1066 Harley Davidson groups.

The run will start at 10am at Whiteways Cafe in Bury Hill, riding to Madeira Drive along Brighton seafront and then onto Custom Cafe, Bexhill, where stalls will be selling hoodies and bike gear to raise funds for the surgery.

As well as this event, a raffle, auction and disco night will also be held on October 5 at the Ladies Mile pub in Patcham.

Anyone wanting to donate bike gear or prizes to the raffle is encouraged to get in touch via the Loui Legend facebook group.

Explaining Loui’s unique middle name, Karly said: ”We named him Loui Legend as he is our little legend.

“When he looks up at us with his bright blue eyes and beaming smile, that’s all we see and makes all the hard work worth it.”