By Liz Fowler

A NINE-YEAR-OLD Angus girl condemned to a living hell by a horrific skin-blistering condition was thrown a lifeline yesterday with news of a major breakthrough by scientists searching for a cure.

Known as the butterfly girl because her skin is as fragile as the insect’s wing, Adana Forsyth of Montrose was born with a most severe form of the condition epidermolysis bullosa, which is at present incurable.

She is one of 350 sufferers in Scotland of the extremely painful genetic disorder which causes her skin and internal linings to blister, bleed and peel off at the slightest touch.

Every day Adana undergoes an excruciating routine of having her blisters burst and her body wrapped in bandages.

Her legs have been so badly affected she is now confined to a wheelchair and use of her hands has become increasingly limited. She requires frequent blood transfusions and is fed via a tube directly to her stomach.

But for the first time, researchers have successfully used gene therapy to correct patches of damaged skin in an EB patient.

The work, carried out in Italy, involved removing a small amount of skin from the patient’s palms and correcting the genetic defect.

The corrected skin cells were grown into sheets of skin in the laboratory until they were of a size suitable for forming skin grafts.

Patches of this skin were then grafted on to the patient’s legs which, like Adana’s, were very badly affected.

The patient’s skin in these grafted areas was completely healed after one week and, a year later, the new skin still looks strong and normal, with no blistering or itching.

“This is the first proof that a gene therapy might provide a solution to this otherwise incurable condition,” said John Dart, director of DEBRA, the charity which funds research for the condition.

“It should give hope to every family affected by EB that real progress is being made in the battle to find effective treatments.”

For Adana’s parents, recently returned from keeping vigil at her bedside in London’s Great Ormond Street hospital for 11 days as she battled her latest serious infection, it seemed an answer to their prayers.

“We went south for what we thought was going to be a routine check-up,” said Dianne last night.

“But she took an infection in her right knee. At one stage we thought she was going to lose her leg.

“It has been an absolute nightmare. But things are now looking hopeful. If they could just rebuild the skin on her hands, knees and feet it would be the miracle we’ve dreamed of.

“She might even be able to walk again. She can’t wear braces because the skin on her feet is too soft.”

Adana has already undergone blood tests, as have her parents, in preparation for clinical trials which Dianne has been told could begin as early as October.

“Her bravery and smiles through all of this misery has been an inspiration and she really deserves to get break from all of this pain,” said Dianne.

“At least there’s hope now that babies born with EB will be able to get this new treatment which means they won’t have to suffer the hell Adana has endured for nine years now,” she added.