A little girl who was being treated for a very rare genetic disorder has lost her brave battle for life.
Thea Paterson’s parents, Richard and Sam Paterson, had to take the heartbreaking decision to turn off their youngest daughter’s life support machine on Saturday evening.
Richard, who is general manager of The Crescent Inn in Ilkley, said: “Thea unfortunately suffered from respiratory failure but she had so many other problems going on that she wouldn’t have been able to recover from that we felt we made the best and most dignified option for Thea which was to switch off her life support, have a good cuddle and say our goodbyes.
“This was and is by far the hardest thing I think any parent should ever have to do.”
Thea was born on July 23, 2013, and six months later was diagnosed with MPS I Hurler Syndrome, a rare genetic disorder which occurs in roughly ten-in-a-million children.
Without treatment the condition would have eventually halted her development and growth and her life expectancy would have reduced to just nine to ten years.
Following her diagnosis on January 10 this year Thea began vital ERT (enzyme replacement therapy), chemotherapy and had a bone marrow transplant at Manchester Royal Children’s hospital.
Richard and Sam, who are also parents to two-year-old Ava, knew the treatment came with huge risks but also knew Thea deserved every chance to lead as long a life as possible.
Thea’s funeral is to be held at Stonefall Crematorium, Harrogate on Wednesday, May 21, at 10.20am, family flowers only.
Donations should be made to theastrust.co.uk.