Girl, 11, loses battle against rare genetic condition

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Girl, 11, loses battle against rare genetic condition

Postby patoco » Sat May 29, 2010 11:06 am

Girl, 11, loses battle against rare genetic condition

Birmingham News

May 25 2010 by Sophie Cross, Birmingham Mail

A BRAVE young girl who spent much of her life in and out of a Birmingham hospital lost her battle against a rare genetic condition, an inquest heard.

Abigail Cane, aged 11, died from multiple organ failure as a result of Aagenaes syndrome, (for further information on Aegenaes Syndrome - please see http://www.lymphedemapeople.com/thesite ... ndrome.htm )a condition of the lymph vessels on November 20, 2009 in Birmingham Children’s Hospital.

The courageous youngster had to undergo two liver transplants as a baby, but her body continued to reject the donated organ and she was last year taken into the hospital’s Intensive Care Unit.

Abi was born in Trowbridge and moved to Frome in Somerset with her family but was regularly treated in Birmingham.

In a touching letter to Children In Need’s Pudsey Bear, when she was eight, after the British Transplant Games in Bath, the courageous youngster said: “Thank you Pudsey for making this weekend special.

“I have had two liver transplants. I was three months old when I had my first one and 21 months old when I had my second one. They were both at Birmingham Children’s.

“I won a prize for disco dancing. I enjoyed walking around Long Leat. I was shaking on the start line and I did not know what to do but it was ok.”

She also drew a picture of herself taking part in a race at the Games, with her parents cheering her on from the sidelines.

Aagenaes syndrome causes lymphedema of the legs, resulting in swelling, and prevents bile from flowing from the liver to the intestine.

During the inquest on Tuesday, pathologist Dr Roger Malcolmson said: “Abigail’s immune system was attacking her liver transplant over a long period of time.

“It’s not unusual – the chances of the body rejecting a second graft are higher.”

Birmingham and Solihull Coroner Aiden Cotter recorded that she died from natural causes at the age of 11.

He added: “This is a very, very tragic case of a young girl dying.

“She obviously had a very hard life and no doubt her family had great stress.”

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