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Courageous siblings Connie and Joe Elson are battling the rare and incurable genetic condition metachromatic leukodystrophy.
Over the last 18 months, this cruel disease has seen the fun-loving, intelligent and witty Connie become totally dependent at age seven.
Connie’s symptoms began at age five-and-a-half when the very bright little girl started to display a lack of concentration and clumsy behaviour.
The progression of the life-limiting disease has been swift and Connie can no longer walk or talk and requires a feeding tube.
Despite the aggression of the disease, Connie keeps a huge smile on her face.
Connie and Joe’s parents, Nicola and Ian, are both carriers of the recessive gene and their children had a one-in-four chance of having the disease.
Joe, five, was also diagnosed with the condition, but at a pre-symptomatic stage he was offered pioneering treatment in Italy as part of a clinical trial.
Unfortunately Connie’s condition is too progressed for this.
The family, from Cark, spent four months in Italy for Joe to have ground-breaking gene therapy treatment.
He had a bone marrow transplant which involved chemotherapy and six weeks of isolation in the foreign hospital over last Christmas and into the new year.
Joe, a pupil at Allithwaite CE Primary School, is only the 15th child in the world to have this treatment and it is working. His family prays that this could be a cure for the disease.
The family is returning to Italy this week for Joe’s assessments and more treatments – then they are due to be at home for a family Christmas.
Mrs Elson, 39, has been busy planning lots of fabulous festive decorations and Christmas treats for her brave children.
She said: “We are so very proud of them. We want to spoil them rotten because they have been through so much. “I am going all out to make this Christmas as special as possible. Last Christmas was spent in hospital, and knowing Connie’s Christmases are limited we don’t want to waste them. It is such as rare condition, one in 160,0000 children. In Connie it has been an aggressive condition.
“You look at pictures from before and think ‘gosh, how can this happen like this?’ Connie was just a normal little girl. And you look at Joe now and he is a normal little boy, but realistically, if he had not have had this treatment, this could happen to him.”
Mrs Elson has nominated her courageous children for North-West Evening Mail Christmas Stars.
She said Joe is fantastic with Connie, a pupil at Sandgate School, and he has stepped up to be a big brother to her.
Children up to the age of 13 from the South Cumbria and Millom area can be nominated as Christmas Stars – sponsored by Healths toy store in Barrow – until December 14.
The winners will receive a visit at home from Father Christmas.
There will also be a Christmas party for our nominees.
OTHER NOMINEES:
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