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Saturday 22nd October 2016

BBC features dying baby

21st November 2006

The BBC documentary series, ONE Life, recently told the story of nine-month-old Toby Ellis who has the rare immune disorder, Ipex syndrome. 

Ipex syndrome is so uncommon it affects only a handful of babies around the world.  It is a devastating condition which turns the immune system on its head; instead of protecting baby Toby against infection, his immune system attacks his own body.

Toby has spent the whole of his short life in hospital having become ill soon after he was born.  He was referred to different hospitals around the country as doctors battled to diagnose his mysterious illness and is now under the care of one of the world’s leading experts on Ipex, Professor Andrew Cant, at Newcastle’s General Hospital.

The documentary showed the baby boy being kept alive in a sterile bubble of clean air.  His devastated mother, unable to kiss her son in case she passes an infection onto him, lives in constant fear for his life.  A bone marrow transplant is Toby’s only hope but of the few Ipex related transplants around the world, most have been unsuccessful.   Without treatment he is unlikely to live beyond his first birthday.

In a cruel twist, the documentary also featured Toby’s aunt who is pregnant and has a 50% chance of giving birth to a baby with Ipex.  With no test available in pregnancy, she has to wait to see if her child has the devastating condition once it has been born.


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amy patrick

Saturday 26th January 2008 @ 17:07

Our son Ryan Patrick also has IPEX. He is 11 years old and had his stem cell transplant in March 2004. He was part of the original studies that identified IPEX as a genetic disease. We would love to contact other parents of IPEX kids. Our email address is patrick6@sbcglobal.net

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