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Callands family raise awareness of their five month old's rare condition
3:00pm Friday 14th March 2014 in News
A FAMILY are hoping to raise awareness and find other children suffering from an extremely rare condition which has meant their five-month-old tot has only spent one night at home.
Parents Dave and Jane Fenton, from Callands, have been living at Alder Hey since William was born on October 25 last year after he was diagnosed with a form of Hirschsprungs disease (Total intestinal aganglionosis).
The condition means the tiny youngster cannot eat or drink anything as he has no nerves in his large or small intestine to absorb nutrients which has so far only been recorded in 100 babies around the world.
But thanks to support groups and forums on the internet the couple, who have been married 13 years, have found a couple in Nottingham and are now hoping to find others to understand more about the condition.
Dave, aged 33, said: “It’s been a rollercoaster.
“We had him at home for one night after he was born and then the following evening we had to take him to A&E because he kept throwing up.
“He was then taken to Alder Hey and initially doctors just thought it was a kink in his bowel causing the problem but he was still poorly and at the time doctors couldn’t find any other cases.”
At the same time Dave and Jane found couples on the internet, doctors also made a breakthrough thanks to a national conference and are now hoping to compare the cases medically.
The couple, who have been juggling caring for William alongside looking after his big sister Sophia, aged two-and-a-half, have been in Birmingham for the past week waiting to hear if William will need to have a liver and bowel transplant.
They have set up a Facebook page to raise further awareness of the condition and promote the importance of organ donation after learning there is a lack of donors at William’s age.
Dave added: “It’s been really shocking but now we have just got to wait and see.
“We’re trying to get in contact with as many families as we can as one of the most difficult things about it is not knowing if there’s other people out there for support.
“It’s been really difficult but we’re coping and taking each day at a time and we want to thank the staff at Alder Hey who have been amazing.”
Search for ‘William's Page, living with Total Intestinal Aganglionosis’ on Facebook.
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