BATTLING youngster Adam Butterfield is going through weekly transfusions as he fights one of the rarest conditions in the world.
The two-year-old, from Peterlee, has Emanuel Syndrome, a chromosome abnormality that affects every cell in his body.
Adam is one of only 200 known sufferers of the condition in the world. It leaves his immune system so low that he is prone to infection.
Mum Nicola McAllister, 34, has been trained by staff at the Royal Victoria Infirmary, in Newcastle, on how to give her son his weekly dose of the antibody immunoglobulin.
It tops up his system sufficiently to fight off the numerous health scares which have so far seen him rushed into hospital up to 12 times a year
From this week, Nicola will carry out the 30-minute procedure which could hopefully bring an end to his hospital trips.
She said: “Every three or four weeks we would end up at the University Hospital of North Tees. We had that for nearly three years before they tried this treatment.
“They started it at the RVI and so far it has been great with no hospital admissions.”
Nicola and Adam’s dad, John Butterfield, 38, were told their son could suffer from heart seizures, kidney failure, asphyxiation, severe mental health problems and an inability to walk or talk. But the transfusions are paying dividends and Nicola said: “I have to put an anaesthetic cream on his leg and a pin goes in each leg.
“There are tubes that attach to a pump. The transfusion takes about 30 minutes.”
Adam’s improvement does not end there as he has started nursery and also goes to sign language classes in Durham City.
“He seems really interested in that,” said Nicola. “He can respond when you sign to him.
“The physios are impressed with him and they are hoping he will be able to crawl or stand on his own.”
Nicola, Adam’s full-time carer, spoke to the Mail to highlight her son’s battle and her fundraising campaign.
The family’s Gloucester Place home in Peterlee needs altering to include a lift that will run from the ground floor to Adam’s bedroom.
And while that money has been covered through a grant, there is still the cost of re-preparing Adam’s sensory room.
“I have no idea what it will come to, but we have to re-decorate two rooms and possibly replace the floor in the dining room,” said Nicola.
Anyone interested in supporting the family’s fundraising campaign can contact Nicola on 07977125779.