The family of a baby who lost her fight against a rare genetic disorder have vowed to continue to help other families affected.
Thea Paterson died last month after complications set in following a bone marrow transplant – the only treatment for her condition, MPS 1 Hurler syndrome.
She went into hospital in Manchester earlier this year, but suffered badly from other health problems.
Eventually her parents were forced to make the agonising decision to turn off machines keeping her alive.
Her dad Richard, from Ilkley, said: “Thea was a fighter, but this was a step too far.
“We had to do the humane thing and let her go. We couldn’t sit and watch her suffer any longer.”
The nine-month-old was perfectly healthy when she was born, but after her family noticed a lump on her back, they saw various medics and she was eventually diagnosed by an expert in Leeds.
Children affected develop normally until the age of three but then regress and have a life expectancy of only around 10.
The only possible treatment is chemotherapy followed by a bone marrow transplant using donated umbilical cord blood.
Thea had the transplant, but picked up flu afterwards and severe complications followed. Richard and his wife Sam were at her bedside throughout.
Richard added: “I don’t think any parent should have to go through it. But we have taken some solace that she’s now at peace.”
Her family set up Thea’s Trust, raising £20,000 so far, and are now registering it as a charity to help families in the north affected by the condition. To donate, visit www.theastrust.co.uk.