It’s not all about the care for Connie - it’s about the craic. When Connie and her twin brother Daniel were born, their parents, Anna and Nigel, were told that Connie needed surgery. Initially the consultant believed she had a cyst, but unfortunately it turned out to be a very rare condition called mega cystic microcolon intestinal hypoperistalsis.
This condition meant that Connie needed a stomach, pancreas, and bowel transplant because she couldn’t absorb or digest food - the only way she could be fed was through a special solution directly into her vein. Although Connie needed this to survive, the treatment caused liver damage, which meant she also needed a liver transplant.
It was a hard time for everyone, a baby with a serious health condition is extremely difficult for any parent, but trying to manage another little baby as well as a three year old, child just made everything more complicated and stressful.
At five months old the Taylor family came for their first stay at Hospice, Anna remembers the time well, “I was nervous about coming to Hospice, but it turned out to be a really fun and happy place to be - bright and cheerful where Connie could be looked after the way she needed and we could stay together as a family.”
At 13 months old Connie went to Birmingham for her transplants, its still a very emotional subject for Anna, her daughter now had a chance to live, and they were so grateful - but she felt such sorrow for the family that lost their child.
As Anna says, “Connie is an example of how important organ donation is.” “Even when Connie was really ill as a very young child she was always smiling and this has stayed with her, she has an amazing will and determination."
She’s now into drama, singing and dancing and is busy working through her graded exams. In the Hospice she loves getting creative in the art room and will never be too old for a session of hide-n-seek with Roisin! Telling jokes and chatting with the night staff into the wee small hours is also a ‘secret’ favourite pass time! She usually comes home wrecked but happy after a break at Hospice.”
Visiting Hospice is part of the Taylor family routine now, Daniel and Tilly love going along too and it forces Anna and Nigel to ‘switch off’ and importantly - someone else makes the tea!
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