Jackson inspires couple’s light show

A Comrie couple are making Christmas bright while raising funds for a charity that is close to their hearts.

Every year since 2002 June and Graham MacPhee have put on a spectacular show of festive lighting in their front garden, raising hundreds of pounds for the CHAS hospice Rachel House at Kinross.

But this year June is firmly focused on a lesser-known cause.

Debra is a national charity that supports individuals and families affected by epidermolysis bullosa (EB), a rare genetic condition which causes the skin to blister and tear at the slightest touch.

Those born with EB are often affectionately referred to as‘butterfly children’ because their skin can be as fragile as the wing of a butterfly.

Painful open wounds and sores form if their skin becomes damaged. In some cases internal linings and organs are also affected. Complications as a result of secondary infection and extensive scarring are also factors that people living with EB often have to face.

June’s great-grandson

Jackson Stone Jackson has the conditions.

June said Jackson is one of the luckier ones and is taking the condition in his stride literally - he has had to learn to walk quickly as crawling damages his knees.

June, who has become an official fundraiser for Debra, told the PA:“Jackson was born without skin on his hands, legs, arms and feet.

“He’s one year old now and is doing quite well but he is still a butterfly child with lots of challenges to face.

“He couldn’t crawl because it takes the skin off his legs so he’s had to learn how to walk very early.”

Jackson lives with his parents Chloe and Duncan in Essex and attends Great Ormond Street Hospital.

June said:“Although he has been quite poorly, his doctors are very pleased with him because he has got a mild form of the condition.

“It wasn’t touching his face but it has been in his ears.

“He had to wear glasses because they found a stigma in his eye and they thought they would try and get rid of it early, but the glasses have given him blisters and he can only wear them every other day.”

Depite the EB Jackson is a happy little lad.

June praised their friends Matthew O’Neil and Richard Mountain for helping Graham set up the displays.

Graham has faced his own trials this year after having a flesh-eating cancer and some bone on his skull removed.

June continued:“Graham is OK now. I’m 80 and Graham is 70. Jackson is only one. Our neighbours are also very supportive of the lights.”

The lights are on from 4pm to 10pm at 2 Ruchil Place, off Langside Drive, and there is a wishing well for donations.

And if you view them from a particular spot Santa might just burst into song for you.