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Granulomatous polyangiitis: – We live in fear

Play and fun outside the four walls of the house are often a natural part of everyday life for children. As a rule, they also do not have to think that it can be harmful to their health.

But five-year-old Albert “Albie” Tilford from Lancashire in the UK is not like most children.

– Every day we live in fear that he will inhale something or come into contact with bacteria that can literally kill him, says his mother Rebecca Tilford (34) to the news agency SWNS, quoted by the local newspaper Wales Online.

She says that they must make sure that the boy does not get too close to crowds or stagnant water. The five-year-old also cannot move where grass is cut, where soil is kicked around or where construction work is in progress, according to the mother.

Admitted to hospital

It must have all started in November last year when the five-year-old had breathing problems. Mum Rebecca Tilford quickly sought medical help to find out what was wrong with her son.

OPERATION: “Albie” Tilford has been diagnosed with chronic granulomatous disease (CGD). The solution lies in bone marrow transplantation. Photo: SWNS/Rebecca Tilford
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The boy was immediately hospitalized. When the symptoms subsided a few weeks later, he was sent home again.

Eventually it emerged that he was suffering from pneumonia in his left lung. “Albie” was put on antibiotics to fight the infection, but they saw no signs of improvement.

– At that time we still felt that everything would be fine. We thought he would respond to antibiotics and be up and active again in no time. But he didn’t, says Tilford.

Then, after a lung biopsy was taken of the five-year-old, the crushing answer finally came.

Damage to blood vessels

The lung biopsy revealed that “Albie” had the rare disease granulomatous polyangiitis (GPA).

Then it was no longer a mystery why the boy’s body did not respond to treatment. People with GPA are unable to fight fungal and bacterial infections, such as pneumonia.

According to Norwegian Health Informatics (NHI) GPA attacks the white blood cells in the body. During the course of the disease, these blood vessels are damaged.

This also leads to a failure of the organs that must be supplied by the blood vessels, according to Major medical encyclopedias.

Goes beyond the lungs

As a result of the disease, “Albie” has contracted a lung infection that his little body is unable to fight.

This makes the boy particularly vulnerable to external influences. The doctors are said to have told the mother that the boy can be “somewhat” outdoors, but with severe restrictions.

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The already serious lung infection can get worse if he is near large crowds, water or grass.

– Absolutely everything is a danger for “Albie” now. Every day we fear that he will breathe in bacteria that could literally kill him, says Tilford.

The only salvation

Although “Albie’s” situation looks bleak right now, all hope is not lost.

The solution is to be found in bone marrow transplantation. If successful, he will get rid of the disease and the white blood cells will be able to function as they should.

It is uncertain when this operation will be carried out. The parents are hoping for a date before winter sets in, as bacterial infections are at their peak.

In the meantime, the family will make the most of the time they have together, given the risks involved in the operation.

Mora says she intends to take her baby boy on a trip before the transplant, as you never know what will happen afterwards.

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