A charity launched by a grieving family in memory of their “little fighter” who died of a rare genetic disorder has raised more than £100,000 to help find a cure.
Joshua Deeth was just three months old when he died in November 2009. He was diagnosed with an aggressive type of Pontocerebellar Hypoplasia (PCH), a rare neurological disease.
Little Joshua spend most of his short life in and out of hospital and being cradled in the arms of his family. He passed away peacefully while sleeping on his mother’s chest.
Since then, Joshua’s parents, Nicola and Stephen, from Crieff, have campaigned to raise funds and spread awareness of the condition that took their second son’s life.
They set up the Joshua Deeth Foundation and have now raised more than £100,000 to pay for a year’s worth of potentially life-saving research into the condition by world-leading specialist Professor Frank Baas.
The Deeths have also produced a book including information about the disease, as well as family stories and photographs. They hope it will bring comfort and guidance to other families living with PCH.
The book which is available from www.thejoshuadeethfoundation.co.uk has already been shipped out to people as far afield as Greece, America, Canada, Australia, Spain and Germany.
Nicola said: “We ran a fundraising event called the 100 Club where we asked 100 people to raise £100 to fund the book. So many local people ran fundraising events and helped fund this, so we’d like to say a really big thank you to all of them and everyone for their support over the last six years.”
She added: “It has been six years since Joshua passed and we have now reached all our goals that we set out to achieve through his charity. We have received so much support from all over Perthshire.”
Joshua was born three weeks early on August 12 2009 at Perth Royal Infirmary, while Stephen was working offshore. As his father raced home, Joshua was transferred to Ninewells Hospital in Dundee with a suspected infection. Doctors were concerned about his poor muscle tone and breathing difficulties.
After a series of tests, the family was given the heart-breaking news that their boy had the rare disease. Specialists said they were unsure of what Joshua’s future could be or how he would develop.
Joshua was eventually allowed home to be with his parents and big brother Charlie, and for two weeks, he started showing signs of improvement.
But his condition deteriorated and at 11 weeks old, he was readmitted to Ninewells and then transferred to Yorkhill Hospital in Glasgow.
Back in Dundee, the family were told Joshua had Pontocerebellar Hypoplasia Type One, the most aggressive form of the disease, and that they would only have him for a matter of months.
Writing an account of his son’s life on the charity’s website, Stephen said: “Joshua was so brave and such a little fighter right until the end. We were so proud of him and feel so blessed to have had him, even though for such a short time.
“He was loved so much by us all and we will never, ever forget him.”