Newspaper article The Journal (Newcastle, England)

Tragedy Helped Save Brother

Newspaper article The Journal (Newcastle, England)

Tragedy Helped Save Brother

Article excerpt

Byline: By Amanda Crook

When little Edward Herbert lost his fight against a rare genetic disorder his parents' only comfort was that doctors might have learned enough to save his younger brother.

The Herbert family were heartbroken when two bone marrow transplants and a year-long regime of harsh drugs failed to save seven-year-old Edward.

He suffered from XLP - which means his immune system was unable to fight off common viruses - and affects less than one in a million children.

Then, just weeks before Edward died, his parents, Alyson and Ian, learned their youngest son Alex was also affected by the disorder. They were told he needed to undergo the same harsh treatment as his brother as soon as possible.

Three weeks after Edward's death the couple took the agonising decision to take four-year-old Alex to Newcastle General Hospital's bone marrow transplant unit to start the treatment which they hoped would save him.

Two years on Alex is the picture of health - thanks to some bone marrow from his older brother Michael - and the family are concentrating on enjoying life as much as possible.

Alyson, 37, a librarian, from Barnard Castle, County Durham, said: "Looking back I wonder how we got through everything - we had two awful years - but we did. You have to keep going for your children.

"It was the hardest thing we have ever done to put Alex through the treatment when he was healthy - and we knew from experience just how sick he would become through the treatment."

"There are so few children with XLP that doctors had never seen some of the symptoms Edward showed.

"They learnt so much about the condition from him that they were able to use when they were treating Alex and other children since then - so we are able to see something positive has come from his illness."

The family first encountered problems with XLP when Edward became lethargic and had problems sleeping. …

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