Seven-year-old Rhys Harris has been declared cured of a fatal genetic disease so rare that it was discovered only seven years ago and only seven people are known to have it.  The disease, Nuclear Factor Kappa B Essential Modulator, also known as Nemo, cripples a child’s immune system and causes an early death.

Rhys, originally from Wales, was diagnosed with Nemo when he was only three.  A recent diagnosis of tuberculosis (TB) left his family devastated, with Rhys facing almost certain and immediate death.  Doctors in France, where Nemo was first discovered, suggested he undergo a course of treatment that would destroy his own damaged immune system and replace it with a bone marrow transplant that would effectively introduce an entirely new and healthy immune system into his body.

The ordeal involved placing Rhys in an airtight chamber enclosing an entirely sterile environment that could not be breached while chemotherapy killed off his complete immune system.  The procedure left him so vulnerable to infection that even his parents could not kiss, cuddle, or touch him throughout the two-month procedure.  Once his own immune system had been effectively destroyed, a bone marrow transplant was performed.

Rhys’s parents, Kevin and Dawn, both 39, and his 5-year-old brother Morgan moved to Newcastle, where the procedure was performed, so the parents could see him, one at a time, every day during treatment.  Morgan maintained daily contact with his big brother via a webcam in Rhys’s chamber.  Rhys’s X-box and a very thoroughly sterilized set of Star Wars Legos kept him entertained throughout the ordeal.

After the bone marrow transplant, his team of physicians expected Rhys to remain in isolation for up to eight months but, after just two short months, Rhys was well enough to return home although he needed a mask to minimize risk of infection.  In February, he was well enough to live without the mask.

And earlier this week, the family got the very best news imaginable.  Rhys is now entirely free of Nemo.  The hospital staff describes a young boy doing all the things young boys should be doing - running here and there and enjoying mischief - instead of the terribly sick little boy they first met.

Rhys is the only child in Great Britain to have this procedure.  Worldwide, there have only been two other such procedures done on children with Nemo.  Only one of them survived.

Source: DailyMail.co.uk