DANNY CHAMPION OF MY WORLD DIED AFTER TRANSPLANT OF BOWEL

[NADIA]

MY SON WAS BORN ON MONDAY 16 JUNE 1997 5 DAYS AFTER BIRTH WE RELISED HE WASNT ABSORBING FOOD WE WENT TO LONDON WHERE THEY TOLD US OUR SON HAS A LIFE THREATINING DISEASE CALLE MICROVILLIOUS INCLUSION DISEASE HE WAS TO SPEND HIS LIFE ON A TPN DRIP WHICH I DID FOR 4 YEARS AND ONLY 4 HICKMAN LINES 2 WEEKS AFTER HIS 4 BIRTHDAY I GOT THE CALL ONLY TO FIND OUT THAT THE BOWEL WAS BAD LATER THAT NIGHT I WENT TO BED ONLY TO RECEIVE ANOTHER CALL THE TRANSPLANT COORDINATOR COULDNT BELIVE I GOT 2 BOWELS IN 1 NIGHT OFF WE GO AGAIN DANNY HAD TRANSPLANT AT 6 IN MORNING AND WAS BACK OUT AT 12 ISH  ALL WAS WELL WE TOOK HIM HOME MY BOY COULD EAT I CAN BAKE HIM A CAKE DANNY DIED UNEXPECTED DURING THE NIGHT OF FEB 05  I WALKED IN TO SEE MY ANGEL WAS GONE   TRANSPLANT GAVE HIMM THE BEST 8 MTHS OUT OF 4 YEARS REST IN PEACE MY DANNY BOY

[Feline]

Hi Nadia
I wish I could be welcoming you under happy circumstances...so sad to hear your Danny didn't pull through post transplant.
I think he's the 1st isolated small bowel transplant I have heard about most I've known and know were combined liver/small bowel,was his transplant done at Birmingham Childrens?

I am happy for you that you feel he had his best times of his life post transplant we knew a wee boy up here in Scotland who was a great friend to our lad,he sadly passed away approx 1yr post liver/small bowel transplant,we see his family alot as they live in the same town and they continue to say he had an extra year and it was his best as he was able to do SO much more than he could on TPN!
I'm sure there is a support network for those who passed away after transplant let me get back to you on that one!

Jo and Mark who are members here lost their wee boy Daniel shortly after his liver/small bowel transplants you can read about Daniel here
http://www.makingitbetter.org.uk/

HUGS

Catriona

[Lorraine]

so sorry for your sad loss im glad Daniel  had some good times after transplant god bless
                          Lorraine (grandma to Kennedy age 19mths liver& small bowel txt)