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Stevie

This is an update on my son, Stevie... Not to make it a long story...stevie

He was born in January 1992...Normal pregnancy etc...on day two he still hadn’t pooped and kept throwing up his feed...My local hospital had no idea what was wrong with him so he was sent to GOSH in London....He was pumped with antibiotics for a few hours but his stomach continued to swell like a balloon so they decided to go in to see what was wrong...They found that he had NEC.. so removed the affected bowel and gave him an ileostomy...He was in hospital for a month fed by TPN...Once he was able to feed I took him home for a couple of months and then he went back to have his ileostomy reversed...They also resection’ed some more of his bowel...

He was fine for a few months but once I started him on solid food he became constipated....Here started the nightmare for us....5 years of chronic constipation.....Abscesses...Fissures..Which resulted in a fistula-in -ano- which he had surgery for on his 3rd birthday..........Still chronic constipation...no diagnosis other than ...I spoilt him!!!!!! It was my fault he didn’t poo properly!!!!!!!!!! So much so that we had to see a psychologist for NINE months...This is another story that I will not get into here!!!!!!!!!!!Anyway...Sorry, this was supposed to be short!!!!!!

On one of our 6 monthly checkups.......We had a new registrar.......A SAINT..........He straight away sent Stevie for a full thickness biopsy of his bowel..It came back inconclusive...SO....He sent him for another...and finally he was diagnosed with HD at the grand old age of 5 years!!!!!!!!!!! For many of you that diagnosis would fill you will terror...For me it was the opposite........At last they knew what is wrong with my son...AND....It wasn’t MY fault!!!!!!!!!!!!!!!!!!!!!! He had the Duhammel pullthrough performed (without colostomy, thankfully).....

The next 2 years were not great.........Chronic incontinence for a year...I am talking 30 times a day!!!!!!!!! Then back to the old days constipation again....Used senna and lactulose again as we did when he was a baby.........Then one day his surgeon said it was time to wean him off it...So I did...It took me 9 months reducing by one ml a month till he was off completely...So by the age of 8 he was fine...No meds, no constipation...no incontinence..A normal child.... In the mean time he had started playing for our local football team and won award after award for it!!!!!!!! Including manager and players player three years on the trot!!!! Yes, I was a very proud mum...I never thought I would see the day my son would achieve so much after what he had been through....

At the age of 10 problems started again...Pains in his tummy and vomiting..........This time mum was on the case............I wasn’t waiting another five years ever again...............He was diagnosed with gall stones...And had his gall bladder removed.........Apparently this was caused by the TPN he was on as a baby! SO..........

To present day..........Stevie is nearly 15 years old......He is as strong as an ox...He still plays football...........He is captain of his school football team....He has just started doing his GCSE subjects...Of which one is PE...What else!!!!!!! Plus media...business studies and sociology......... He is a kind and compassionate child....Thoughtful to others...Whatever their circumstance.....Something I think he has learnt himself by what he had to go through all his life.... He has never complained...or used it to gain sympathy etc..In fact he will shy away from attention...Like when I bring it up to someone...

I am so proud of my son... AND...If his success through this disease helps someone..out there somewhere...Then I am equally proud.... I know that there are many HD kids out there who have fared far worse than Stevie has....This is one disease that shows no bounds.......It is evil....No one child is the same.... I just hope by reading this that you can see a light at the end of the tunnel........There have been countless success stories within this group that can be told.........BUT...thankfully for them...Once their kids are fine they leave us...SO......Sometimes you are only left with the ones that need help and only have sad stories to tell...........So....I hope this one will make up for those..... STEVIE IS A SUCCESS

Now taking business....media.....drama... at A level and is still doing well at 19 years old


If you want to see stevie growing up click or if you want to watch a video he made click