OPT FOR LIFE – Agony of Aaron, 4, as he waits for transplant

A FOUR-YEAR-OLD Glasgow boy has a life-threatening condition that causes his entire body to itch unbearably.

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A transplant could offer fresh hope for Aaron and mum Jacqueline
A transplant could offer fresh hope for Aaron and mum Jacqueline

Doctors say it is the equivalent of Aaron Higgins being bitten by 500,000 midges.

He suffers from Alagille syndrome, a rare genetic condition that affects all the vital organs, including his heart and liver.

Next month Aaron, from Baillieston, will be assessed for a liver transplant that could ease the itching and help prolong his life.

So far, he has endured 15 operations.

His immune system has no memory so he can pick up infections such as chicken pox repeatedly.

The average life expectancy for children affected by the condition was, until recently, 20. However a transplant could offer fresh hope for Aaron and his mother Jacqueline, 40.

Today, she backed the Evening Times Opt Out Campaign, which is calling for Scotland to change to a system of presumed consent for organ donations when people die, known as an opt-out system.

She said: "Watching him suffer is unbearable. The itching is the worst of his problems.

"He doesn't sleep. He stands at the top of the stairs crying, 'Help me mummy'.

"The doctors said it was like the equivalent of half a million midge bites. It's in his ears, up his nose. He gets really frustrated and angry. Nothing helps and his body bleeds with the scratching.

"I don't think we are going to have much option than to go for a transplant. It is about his quality of life."

Aaron was diagnosed with Alagille Syndrome, shortly after birth. He had severe jaundice and, at one point, he stopped breathing. A blood test confirmed he had Alagille's, which affects only about one in 100,000 children.

It is an inherited disorder in which a person has fewer than the normal number of small bile ducts inside the liver.

The decreased number of hepatic ducts causes bile to build up in the liver, leading to liver damage. Eventually, the liver may stop working and a transplant is necessary.

Aaron's operations have included open heart surgery and a procedure to divert the flow of bile to his gall bladder. He has a button on his tummy with a drain that his mother must empty every night.

Despite this, his mum, who owns a hairdressing salon in Baillieston, says he is a happy little boy. She said: "He has great spirit. He is always smiling and full of mischief. If there is something going on he will be in the middle of it.

"Alagille's children used to live only until they were 20. If they get a transplant it gives them a better chance, but it depends on their hearts.

"We just cherish every moment we have with Aaron. Every year we give him a massive birthday party."

Doctors are coming up from King's College Hospital, London, on March 19 to assess Aaron for a liver transplant.

Jacqueline knows her son could face a wait for a new liver, compounded by the fact he has a rare blood group.

She has backed our plea for a change to an opt-out system to help increase donation rates.

She said: "I have always been a donor and have persuaded a lot of my friends to sign up.

"I think it is right that we should have to opt out, rather than opt in.

"It is so hard knowing if he goes on the list, you are waiting for another little child to die."

Aaron's family and friends are organising a Spring Fair on April 6 from noon-3pm at Robert Burns Masonic Halls, Baillieston, in aid of the Starlight charity, which organised a trip to Disneyland Paris for Aaron last year.

To refer a child for a wish or to make a donation, see the website: www.starlight.org.uk

caroline.wilson@eveningtimes.co.uk

Families

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