Journey of life to help sick child

A COUPLE from Lostwithiel made a 'journey of life' across Europe in a camper van to help their sick baby with biotherapy techniques.

Speaking exclusively to the Cornish Guardian from the Czech Republic, Rufus, 36, and 31-year-old Elena Duffin said they have seen improvements in baby Ilya, who was diagnosed with an extremely rare genetic disorder.

"Ilya is doing a little better and is eating much more," said Rufus. He's started gaining weight again and is a bit more alert. He had his first birthday on October 24 – it's amazing that a year's gone by already."

Twelve-month-old Ilya suffers from gangliosidosis, the same aggressive disease as his older brother Logan, who died in May 2008 and did not reach his second birthday. In the last months of Logan's young life, his parents found treatment originating from Slovenia which eased his pain and helped him eat until his last day.

The couple, who met in Prague, drove with Ilya this month to the clinic of Zdenko Domancic in Slovenia for biotherapy from world-renowned experts. While the reiki-style healing cannot guarantee a cure, patients with genetic conditions have had good results.

Rufus said: "As Elena took Ilya and walked over to sit in front of Stipe, a huge lump hit my throat. Ilya sat there receiving treatment at the clinic thanks to the love, support and generosity of the countless friends, family and complete strangers who helped us so much.

"Ilya sat, fairly quietly, receiving treatment in his Mum's lap. We were told his temperature may go up to fever point but this was normal and expected as the body is kick-started into action."

The Duffins vowed to travel to Bled, Slovenia – the place where the technique which helped Logan originated.

Speaking to the Cornish Guardian Rufus said: "If there's a one-in-a-million chance of this helping him in some way, then it's got to be worth it."

Logan had advanced symptoms of the disease, including apnea fits, which his parents were able to control with biotherapy. Major organs are affected as the disease progresses - teeth even stop growing. Ilya is showing early signs of the disease, with cherry red spots on the retina and an exaggerated startle reflex.

Rufus and Elena needed £1,000 to travel to the clinic and they set up a website www.journeyoflife.eu – they received enough donations from Lostwithiel friends to make the journey.