A TRUST set up in the name of a little girl has finally been awarded official charity status.

Richard and Samantha Paterson, the couple behind Thea's Trust, the charity set up for their baby daughter Thea after she was diagnosed with a rare genetic disorder MPS 1 Hurler Syndrome, announced this week that after a very long slog and lots of pushing they had finally received an official charity number.

Richard, general manager of The Crescent Inn in Ilkley said: "Hopefully we can now step things up a gear in terms of fundraising and recruiting more businesses to take on Thea's Trust as their official charity for the year.

"Many thanks to those of you that are already doing this for us and we hope you will continue to support us for the foreseeable future."

Thea's Trust was set up in March 2014 and within three months it had raised £20,000. Now it is estimated that £35,000 has been raised thanks to outstanding efforts of Trust supporters.

Events have included music nights, sponsored walks, and even the release of an official charity song. Upcoming events include a charity ball which will take place at The Crown Hotel in Harrogate on November 28 this year.

Supporters have been moved by Thea's brave battle to overcome the rare genetic disorder that occurs in roughly ten in a million children. Born in July 2013, Thea was diagnosed with MPS in January this year.

Without treatment the condition would have eventually halted her development and her life expectancy would have been reduced to just nine or ten-year-old.

Thea began vital enzyme replacement therapy, chemotherapy and had a bone-marrow transplant at the Royal Manchester Children's Hospital.

Richard and Samantha, also parents to Ava, knew the treatment came with huge risks but also knew Thea deserved every chance to lead as long a life a possible.

Unfortunately, Thea contracted flu in the early stages of her bone marrow transplant, which badly affected her lungs as she had little or no immune system. She also developed GvHD stage 4 which is not uncommon during bone-marrow transplants. She sadly died in May, aged just ten months.

Richard added: "Thea’s legacy and memory will live on through her Trust and it’s primary functions will remain the same even though Thea sadly is no longer with us. These are to focus on continually raising awareness as well as providing ongoing financial support for those families who’s children are diagnosed with this very rare life limiting disorder.

"With the charity number having now come through we will be making some sizeable donations over the next few weeks to the MPS Society, Ronald McDonald House in Manchester and to Heart Link for all the wonderful work these charities do for children and families effected by MPS.

"We shall also hopefully be launching our family support once we have finalised the procedures and referral system.

"Again we'd like to thank you all from the bottom of our hearts for supporting us so far to date and we look forward to the future."

Thea’s Trust is registered in England No 9002666, Registered Charity No 115805. For more information and further details about the charity ball on November 28 in Manchester visit: www.theastrust.co.uk