Lights up for Jack­son

Strathearn Herald - - FRONT PAGE - Lynn Duke

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 skin con­di­tion which causes the skin to blis­ter and tear at the slight­est touch.

Those born with EB are called 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 is a but­ter­fly child.

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 Her­ald: “He 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 wee boy.

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.

Gen­er­ous June and Gra­ham MacPhee

But­ter­fly boy Jack­son Stone

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