Alexander's Christmas tree risk
| By Jane Elliott Health reporter, BBC News |
 Alexander always needs to take care |
Along with the pleasure of kicking autumn leaves or snowball fights, they are something he needs to avoid.
For Alexander, from London, has a rare genetic condition, affecting only four people in a million - Chronic Granulomatous Disorder (CGD).
CGD is a blood disorder mainly affecting boys - a faulty gene in their bone marrow affects some white blood cells so they cannot produce the response they need to fight off infection.
Avoiding danger
This leaves someone with CGD much more susceptible to fungal and bacterial attack - so children like Alexander need to avoid anything which might trigger an attack and lead to them being in hospital.
"Fungal spores and bacteria can trigger it - and they are in the air we breathe," said his mother, Karin.
 |  We would not have a live Christmas tree and if we go into someone's house who does Alexander knows he can look at it, but not stand close  Karin |
"Every day is a balance for Alexander."
Alexander must avoid damp or dusty places and contact with anything that might harbour spores of mould which could cause him to develop serious lung infections.
The list includes Christmas trees, sawdust for the rabbit hutch, the compost heap and old carpets.
Karin tries her best to ensure Alexander gets as normal a life as possible, but says there are some risks, like the real tree, that are just not worth taking.
"You can cocoon your child, but that doesn't save him from breathing the air," she said.
"You have got to let them almost lead a normal live - but make them aware of issues.
Environmental risks
"If I am taking the underground I am quite nervous because of the amount of fungus and bacteria in the air.
"Building sites are also a high risk because of all the fungal spores and I worry that he might breathe them in.
"We would not have a live Christmas tree. If we go into someone's house who does, Alexander knows he can look at it, but not stand close.
"If Alexander wants to go to a friend's house I will ask in advance if they have a Christmas tree and, if they have, whether he can play elsewhere in the house.
"I know the ideal situation would be to say he can't go - but for me the big thing is inclusion.
"But we don't want to take unnecessary risks, because if he breathes in fungal spores they can go to his lung and he could get respiratory infection and inflammation.
"And as he has quite a weak chest already that is worrying - things could get serious and terminal quite soon."
 Alexander has to avoid playing with snow |
Alexander has been fortunate to be one of the few patients who has not had a prolonged stay in hospital, but he has been in hospital more often than most boys in his own age group.
"Alexander is also particularly prone to bowel and skin infections and sores can take several months to heal," said Karin.
The family first discovered problems when Alexander was about six months old.
"He got a lump on his anus and it became inflamed and he got it taken out, but it did not heal so the nurses had to dress it every day," she said.
"Then a few months later his lymph gland came up in a big huge golf ball and he had another operation to take that out, but again it did not heal and by this time I was getting concerned."
The family's concerns intensified when Alexander was given a BCG jab to protect him from TB.
His body reacted to the live bacteria in the vaccine so badly that he developed a weeping sore on his arm.
"The community nurse was our guardian angel," said Karin.
"She thought there could be something wrong with his skin and got him referred to a dermatologist, who then referred him onto Great Ormond Street Hospital, London, where he was quickly diagnosed."
Future hopes
It was then that Karin found out how rare her son's condition was and that doctors were still trying to develop an effective treatment.
Bone marrow transplants have yielded some success, and gene therapy holds out hope for the future, but for most patients, the only option is to take drugs to prevent flare ups.
The CGD Research Trust's part-time nurse is Marie Kirwan, based at Wythenshawe Hospital, Manchester. She deals with patients all over the UK.
| Chronic Granulomatous Disorder (CGD) CGD affects four in one million people People with CGD have a faulty gene in their bone marrow, which means white blood cells do not function properly Medication is needed constantly to fight infecion Bone marrow transplant has offered some success |
She said that although there were many risks CGD patients can avoid, some risks were simply not worth taking.
"Any rotting vegetation is a risk so we don't encourage people to have potted plants, as it runs the risk of generating spores and if they are inhaled it can cause lung problems.
"The risk from Christmas trees is low once they are in position in the house and dressed, but it is just easier to avoid it because there are good quality artificial trees out there.
"If you get an artificial tree you have removed the risk," she said.
Rosemarie Rymer, general manager of the CGD Research Trust, said: "For people affected by CGD, their normal pre-occupations of daily life don't disappear for Christmas.
"The decision about Christmas trees illustrates the struggle to keep a balance between living a normal life and keeping possible infection at bay.
"Families with CGD have to take daily decisions, such as should they have a pet, or should their child be at school when building work is taking place nearby?"
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