Rare disorder leaves boy, 5, with just one working lung

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A five-year-old boy has been diagnosed with a rare genetic disorder, meaning playing outside in the fresh air could kill him.

Albie Tilford’s family were told last month that he was suffering from chronic granulomatous disease (CGD), which required him to have a life-saving bone marrow transplant.

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CGD is a condition that prevents white blood cells from killing bacterial or fungal infections.

As a result of his diagnosis, Albie has developed pneumonia in his left lung – an infection the body cannot fight.

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With only one functioning lung, his mother Rebecca Tilford, 34, was warned by doctors that exposure to bacteria or fungi could be fatal.

Albie Tilford, five, was diagnosed with chronic granulomatous disease (CGD) last month, requiring a life-saving bone marrow transplant.

“Every day we live in fear”

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His parents say it allows him “little” outside access — but they must avoid crowds, water, grass, wood chips, loose soil, and construction work.

They’re forced to wear masks in case anyone starts mowing on their rare outings, and if they’re playing in the yard and they hear a lawn mower, they’re forced to come inside.

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Rebecca, a teaching assistant from Preston, Lancashire, said: “Everything is a danger to Albie now.

“Every day we live in fear that he will breathe something in or come into contact with bacteria that could literally kill him.

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“He does go outside a bit but we have to make sure he doesn’t get near crowds or near standing water.

“He also can’t go everywhere where grass is mowed, where there is wood chips, earth is kicked around, or where there is construction.

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“The medication he’s taking makes his skin very sensitive to the sun, so he needs factor 50 and a hat whenever we venture out.

“He still only has one lung so we’re being very careful at the moment, but generally people with CGD can go outside but have to take a lot of precautions.

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Rebecca said they wear high protection face masks, among other things, saying: “We carry FFP3 masks with us everywhere in case someone starts mowing and if they’re outside in the garden and people start mowing, we bring them in and close the window.”

Albie Tilford.

“We were deeply shocked by the diagnosis”

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Albie first fell ill in November last year after struggling to breathe at home.

Rebecca rushed him to the hospital, but he gradually got better and was discharged a few weeks later.

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When Albie returned home, it wasn’t long before he was having trouble eating and walking without getting breathless again.

This kept getting worse before Rebecca decided to take him to the hospital again to identify the problem he was having.

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She was first told his struggles were all to do with anxiety and nothing more, but, unhappy with this diagnosis, Rebecca sought another doctor’s opinion.

And as Rebecca expected, a third check-up revealed Albie was suffering from pneumonia in her left lung.

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He was referred straight to Blackpool Victoria Hospital where he was given antibiotics to fight the infection.

But after completing the course there was no improvement and Albie was still extremely weak.

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He was then referred to Manchester Children’s Hospital, where he underwent pulmonary physiotherapy and was put on a ventilator to help his breathing.

They performed a lung biopsy which tragically revealed he was living with CGD.

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This explained why Albie’s body was not responding to treatment, as CGD sufferers are unable to fight off bacterial and fungal infections – like pneumonia.

Rebecca, a mother of two, said: “The diagnosis has shaken us to the core.

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“Up until last November he was a happy, healthy, energetic boy – everything was fine.

“As soon as he started breathing I knew something was wrong, but we were assured it was nothing to worry about.

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“But in April his breathing got so bad I had to take him back and then when we asked him for the third time we found out what the root of the problem was.

“At that point we still thought everything was going to be fine.

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“We thought he would respond to the antibiotics and be awake and active in no time.

“But he didn’t – and that’s because of this genetic disorder he was born with which only started affecting him in the last year.

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“CGD prevents his body from fighting bacterial and fungal infections, and the older he gets the more he plays outside where bacteria is everywhere.”

Albie Tilford with his mother Rebecca Tilford.

Albie needs a bone marrow transplant

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The only chance Albie has for survival is to undergo a bone marrow transplant, which if successful will rid him of CGD and allow his white blood cells to work properly.

But the transplant comes with a lot of risk and doctors have told Rebecca and Albie’s father, Alan Robinson, 40, he has a 70 percent chance of survival.

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Albie has to isolate himself for a year after the transplant. During this time, Rebecca will be his primary caregiver 24 hours a day and will therefore not be able to work.

The family is worried about their financial situation as Rebecca hasn’t worked since April.

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Alan works 60 hours a week but the income barely covers their bills and mortgage – which worries them that they will soon lose everything.

Before the transplant, Rebecca and Alan want to take Albie and his sister Jessica with them. Eight, one last time on vacation in case her beloved son doesn’t make it.

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They are currently preparing for the winter when bacterial infections are at their peak – but are hoping Albie can have the transplant before then.

The most dangerous environments for Albie are large crowds and areas with standing water or freshly cut grass.

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“It’s so hard to see him like this”

The tot occasionally goes outside when it’s considered “safe,” but Rebecca and Alan are extremely careful.

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“We want to take Albie away before the transplant to spend some time together in case the worst happens,” Rebecca said.

“I can’t believe things have come to this in less than a year but they have come and we have to find ways to deal with it.

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“The hospital visits cost £30 for petrol and £15 for parking.

“Combined with my disability and the days off Alan has to bring, we’re worried we’re going to lose everything.

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“He’s going to be on immunosuppressants to prevent GVHD, so he won’t be able to go to school or big crowds for about a year.”

“I set up a Go Fund to help with post-transplant tutoring costs for Albie.”

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“He’s the sweetest boy and son that mum and dad could ask for – it’s so hard to see him like that.

“The care in Manchester has been fantastic and we are grateful that they diagnosed him and offered treatment so quickly.

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“We are awaiting a bone marrow transplant in the next few months which will hopefully cure him forever.

“But until then, we just have to focus on doing everything we can to protect him.”

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Albie’s fundraiser can be found on the following page go fund me Side.

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