"Everything is a danger" to a young boy whose only chance of survival is a bone marrow transplant.
Back in November last year, Albie Tilford, five, began struggling to breathe and was rushed to hospital before he gradually improved. However, just a few weeks later the five-year-old started having trouble eating and walking without becoming breathless.
After getting worse, mum Rebecca Tilford said she was told his struggles were anxiety-related but she soon sought the opinion of another doctor. Eventually, it was found he had pneumonia on his left lung and was given antibiotics, leaving Albie with one working lung.
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But the nightmare continued when there was still no improvement and he was referred to Manchester Hospital to be put on a ventilator to assist his breathing. It was there doctor's diagnosed him with Chronic Granulomatous Disease (CGD), a disorder which prevents white blood cells from killing bacterial or fungal infections.
Rebecca 34, has now been warned by doctors that exposure to bacteria of fungi could be fatal. This means when he goes outside, the family has to avoid crowds, water, grass, wood chips, loose soil and building work and have to carry face masks.
The teaching assistant from Lancashire said: "Everything's a danger to Albie now. Every day we live in fear of him breathing in something or coming into contact with bacteria which could quite literally kill him.
"He does go outside a little but we have to make sure he doesn't go near crowds of people or near stagnant water. He also can't go anywhere the grass is being cut, where there are wood chips, anywhere soil is being kicked around or anywhere building work is being done.
"The medicine he is on makes his skin super sensitive to the sun so he always needs factor 50 and a hat on if we do venture out. He's still only got the one lung so we're super cautious at the moment but as a rule people with CGD can go outside but have to take a lot of precautions."
The mum-of-two said the diagnosis "shocked us to our core" as Albie was a "healthy boy with bundles of energy". But now, his only chance of survival is through a bone marrow transplant.
This comes with a huge risk as doctors told his parents Rebecca and Alan Robinson, there is a 70% chance of survival. Albie will also have to isolate for a year after the transplant leaving Rebecca as his 24/7 primary care giver and unable to work.
This adds to the financial stresses for the family. Rebecca added: "We want to take Albie away before the transplant to spend some time together in case the worst was to happen. I can't believe in less than a year things have got to this, but they have, and we need to find ways of dealing it.
"The hospital visits are £30 in petrol and £15 for the car park. That combined with me not working, and the days off Alan has to come with us, is making us worried we will lose everything.
"He will be on immunosuppressants to prevent GVHD so can't go into school or around big crowds for around a year after. I've set up a go fund me to help with the cost of tutors for Albie after the transplant.
"He's the sweetest boy and the best son a mum and dad could ask for - it's so difficult to see him like this. The care at Manchester has been amazing and we're grateful for them diagnosing him and offering him treatment so quickly.
"We're holding out for a bone marrow transplant in the next few months which will hopefully cure him for good. But until then we just need to focus on doing whatever it takes to keep him safe."
Donate to Albie's Go Fund Me by clicking here.
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