Member Article

‘Keep the candle burning’ - The official charity single of Thea’s Trust

On the Friday the 25th July,Thea’s Trust launched their official charity single ‘Keep the Candle Burning’. The launch took place at the ‘Den’ in Harrogate to celebrate the singles release on I-Tunes.

The single was written and created by Jonathan Skinner a local musician and friend of Thea’s Trust. The single was released in a bid to raise money and awareness for children living and suffering with MPS.

The Thea’s Trust was set up by Thea’s family and others, you can read all about Thea below:

Thea was born on July 23, 2013. Six months later, she was diagnosed with MPS I Hurler Syndrome. This very rare genetic disorder occurs in roughly 10 in a million children.

Most symptoms of MPS I appear between seven months and three years. At this point, Thea’s growth and development would stop and she’d begin losing her ability to walk, talk and all the other things children her age would normally do. She’d eventually lose all neurological function and have a life expectancy of just 9 or 10 years old.

After her diagnosis Thea underwent vital ERT (enzyme replacement therapy), chemotherapy and a bone marrow transplant at Manchester Royal Children’s hospital.

Unexpectedly during her transplant process Thea suffered multiple complications’ including contracting Influenza A and developing Graft Vs Host disease.

Thea tragically passed away on the 10th May peacefully in her parents arms.

The song its self is a raw and powerful track filled with love and emotion that captures the love and passion of all of the family, friends and community that were connected to Thea.

To get your copy you can spend 79p and get it through I-Tunes. 100% of the proceeds of the digital online sales will go to Thea’s Trust so the more people who know and buy the song the more money they will raise! Please show your support for such a worthy cause and in memory of such a brave little girl.#keepthecandleburning

This was posted in Bdaily's Members' News section by Jonathan Skinner .