Kevin Harris from Wales, England emailed me last week telling me that his son Rhys has NEMO.
I created a website (www.cure4rhys.org) for Rhys.
Heres the introduction:
Rhys got diagnosed NEMO around about April last year.
He has always been back and forth hospital since he was nine months old, he got meningitus which caused him to become profoundly deaf, then he had three bouts of pnuemonia.
Then last year he just constantly kept spiking tempratures and nothing the hospital he was in could do, so they transferred him to a childrens hospital close by and done all the tests under the sun thinking it may be a cancer. They found he had contracted TB avium and after further inspection they also diagnosed NEMO.
For a year now they have contained them both I give Rhys Vivaglobin subcontaneously at home and a sub cut of gamma interferon 3 times a week.
Recently Rhys went into hospital spiking uncontrollable temps, again more tests but this time they found the TB to be in his blood and lymph nodes.
As I am sure is the same with you over the past years we have befriended a lot of the Consultants and Nurses by now, and we all had a meeting, thinking it was routine… The mixture of NEMO and TB is not good and his longevity of life is under 1 year continuing the drug regime his is on now.
To get through this and have any sort of decent lifespan he needs a BMT…. Consultants from all over the world have been contacted and we flew to meet a Dr Mario Abinum a little while ago, the prospects of him surviving the Chemo and BMT are around 30% if we get a good match.
At this moment Rhys is fantastic, CRP down to 29 when it was 239, and as I type this he is next conquering the world with his little brother Morgan on the Playstation and all I can hear is laughter. A smile and a laugh hopefully will help him get through the coming months.
From Kevin, Dawn, Rhys and Morgan
GO RHYS!
Other boys with NEMO are:
Cooper, Jack, Jackson and Simon