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Personal stories
Daniel’s Story
Hi all, my name is Sarah Green and I have a son, Daniel,
born in 1996, who is jejunostomy fed. When Daniel was
born, half his oesophagus was missing and he had a gastrostomy
tube fitted on day 1. Two months later, he had his stomach
moved up behind his chest to join it to his oesophagus.
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| At this time,
a jejunostomy tube was fitted. We were told he would be
able to eat normally within a few weeks. Years down the
line and he is still not eating! |
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Daniel
started school just before his 5th birthday and has
coped very well. The other children just ignore the
fact that he wears a backpack. They only mention it
when it starts ‘bleeping’. His classroom
assistant nicknamed him ‘the bleeper’ almost
from the day he started school, although he has a different
pump now and that doesn’t get occluded as much.
He is doing very well at school, although his handwriting
is almost illegible! |
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I recently went to open evening and his teacher
told him to put his hand across the top of his
head and cover his ear. (Strange, I thought!)
He couldn’t do it and this, she told me,
was immaturity and his handwriting would improve
when he could do it. We will have to wait and
see on that one.
Anyway, I would love to see more reports like
this one on the website and look forward to other
people’s stories. Has anyone else heard
of this hand over the head thing? |
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Samuel’s
Story
Hi, my name is Sharon and I have a son called Samuel,born;
in 1998 with Total Intestinal Hirschsprungs Disease,
this means he has no nerves in his whole intestine.
He has been on TPN since birth; he also has a gastrostomy
tube and an ileostomy. Samuels’s life has had
its ups and downs and many trips to the hospital. |
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When he was born he stayed
in the hospital for a year before we were able to take
him home. Samuel is on TPN seven nights a week for 18
hours. In 2004 he started mainstream school and is doing
well there and the other children have been so accepting
of him and his pump.
He was presented with the award for Child of Courage
2003 in Westminster Abbey and this was such an honour
for Samuel to receive it. On the day we were thinking
about all of our other wee friends out there who face
life living on TPN. |
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| Samuel truly is
an inspiration to all that meet him and know the
battles that he faces each day.
PINNT and HALF-PINNT have made such a difference
in his wee life too, meeting adults and children
on enteral and parenteral feeds made him realise
that he is not alone and that there are others
out there just like him and he always looks forward
to our meetings. |
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Jamie’s
Story
Hi, my name is Tracey, and in the year 2000 I gave
birth to my second child, Jamie, who is a gorgeous little
boy.
We were aware at the 20-week scan that there was a
problem. At 32 weeks it was decided that Jamie was suffering
from Posterior Urethral Valves, as his bladder was shown
to be very large and very full. However at birth it
was found that this was not the case, and it took a
further 3 months for the true diagnosis, Hollow Visceral
Myopathy. A full-section biopsy showed that Jamie lacks
the protein, Actin, which severely impairs the function
of the smooth muscles of his bladder and bowel. |
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Jamie has been totally
TPN dependent since he was 7 weeks old. He now feeds
over 12 hours every night. He has a gastrostomy,
primarily used to remove bile from his stomach,
and an ileostomy for the small amount of waste that
makes it through his intestines. |
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| At 2 years
9 months Jamie started pre-school. At first it was very
difficult to allow someone else to care for him, but
it was important to “let go”. He hated it!
But 6 months on he had a change of heart, and now looks
forward to going and I enjoy my “free-time”.
Three and a half years ago we did not believe that
we would ever have a “normal” life! Being
in contact with people in a similar situation has shown
us and encouraged us to make it so. We now go camping
(thanks to the invaluable support of the company who
supply and deliver Jamie’s food) travelling further
away each time. Last year we ventured by car/ferry to
the South of France for a week!
So, thanks everyone, for sharing your experiences.
It helps to know that we’re not alone. |
