A DEVOTED aunt is running an ultramarathon to raise awareness of a devastating condition affecting her young nephew.

Two year-old Dylan Llewellyn-Richards has severe gastroparesis - which means he is unable to eat and needs to be fed directly into his bowel for 20 hours a day.

Now his aunt Julia Llewellyn is to run 100km from London to Brighton to improve awareness of the rare condition and to raise money for a charity which helps sufferers.

Dylan, from Guiseley, suffered severe reflux as a baby and had to be tube-fed. After a series a of complications, operations and frequent lengthy stays at Leeds General Infirmary, he now has severe gastroparesis, or paralysis of the stomach. He continues to vomit frequently, despite the direct feeding line, and needs constant, around the clock care.

The youngster is attached to a feeding tube and pump, which he has to pull around behind him wherever he goes, meaning his life is severely restricted. He frequently gets tangled and trips over the tube, which can be dangerous and which requires immediate medical attention if it leads to the tube portal being pulled out.

Unlike most toddlers his age, Dylan doesn’t have the freedom to develop and thrive as his restrictions curtail normal play. His physical development and speech have been delayed, but his determination and spirit have helped him to overcome these obstacles.

Julia, 32, who also lives in Guiseley, said: "Despite undergoing frequent painful procedures and often being very unwell, Dylan is the most incredible, resilient and smiley little character you can imagine and I am so proud to have him as my nephew."

Dylan's condition has had a profound effect on the whole family, especially Julia’s sister Nikki, her husband, Leon and their other son, four-year-old Caden.

Julia stressed: "I am in absolute awe of how strong they are and how they take on the unimaginable challenge of having, at times, a very poorly little boy."

Nikki said: "The last 18 months have been an emotional rollercoaster and our focus every day is to give Dylan the support he needs. Most days are unpredictable which puts a strain on our family and friends - especially our eldest son, Caden - as we juggle varying clinical appointments and Dylan’s complex medical requirements. We would be lost without the support of those close to us, especially from Dylan’s grandparents.

"We are so proud of Julia’s fundraising efforts and hope that awareness of Gastroparesis and Intestinal failure will increase. Our lives have fundamentally changed managing Dylan’s condition and the donations raised will help fund research into this illness to provide a better quality of life for children like Dylan, and other sufferers, in the future.

"Eating and drinking is something that we all take for granted, and it is difficult for people to imagine the impact of not being able to do something which is a perfectly normal part of life for most."

Although she is an avid runner and cyclist and has previously taken part in the Edinburgh marathon and numerous half marathons this will be Julia’s toughest challenge to date.

By taking part in the event on may 23 she hopes to raise awareness of this unusual condition, but at the same time, raise money for GIFTuk, a charity which provides support and resources for families, like Dylan's, who are living with gastroparesis and intestinal failure. GIFTuk also donate a large proportion of fundraising directly to research into gastric motility disorders at the Wingate Institute, London and similar projects throughout the UK.

The future is uncertain for Dylan at the moment, but his family remain hopeful that there is something better around the corner and they thanked the team at Leeds Children’s Hospital for their care and support.

Donate via Julia’s fundraising page at http://www.everyclick.com/runningfordylan

Visit www.london2brightonchallenge.com for further details about the run.