Ilkley parents' heartbreaking decision over desperately ill baby Thea

Wharfedale Observer: Little Thea Paterson, of Ilkley, who passed away on Saturday Little Thea Paterson, of Ilkley, who passed away on Saturday

A baby girl being treated for a rare genetic disorder has lost her brave battle for life.

Thea Paterson’s parents, Richard and Sam Paterson, of Ilkley, had to take the heartbreaking decision to turn off their youngest daughter’s life-support machine on Saturday night.

Richard, general manager of The Crescent Inn in Ilkley, said: “Thea unfortunately suffered from respiratory failure but had many other problems she wouldn’t have been able to recover from.

“We felt we made the best and most dignified decision 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 last July and six months later was diagnosed with MPS I Hurler Syndrome, a very rare genetic disorder that occurs in roughly ten in a million children.

Without treatment it would have eventually halted her development and growth and her life expectancy would have been reduced to just nine or ten years.

After her diagnosis on January 10 this year, Thea began vital enzyme replacement therapy, chemotherapy and had a bone-marrow transplant at Royal Manchester Children’s Hospital.

Richard and Sam – 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.

If the treatment had been successful it would have enabled Thea to start producing the missing enzyme herself and could have given her a relatively normal life expectancy.

Richard and Sam set up Thea’s Trust and shared their daughter’s difficult journey with supporters.

Fundraising took place to help raise vital cash and awareness of MPS and to support the charity the MPS Society and other affected families.

Thea, left, was in the hands of world-leading medical experts but from the very early stages of her bone-marrow transplant she contracted flu, which badly affected her lungs as she had little to no immune system. She spent a lot of time in a paediatric intensive-care unit where she required heavy respiratory support, pain relief and sedation.

Thea also developed GvHD stage 4 (graft versus host disease) which is not uncommon during bone- marrow transplants, but which also caused severe problems for the brave little girl.

Thea’s funeral will be at Stonefall Crematorium in Harrogate on Wednesday, May 21, at 10.20am. Richard and Sam said: “We would like to extend a warm welcome to all our family, friends and anyone who has followed Thea’s story to date to help us celebrate her life.

“Thea touched a lot of hearts during her short time with us and we would like to give her the big send-off she deserves. Please dress brightly.

“Can we please ask for family flowers only? If you wish to contribute in any way, please make a donation to theastrust.co.uk.”

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