A FATHER-OF-TWO whose world was turned upside down when his daughter was found to have a rare genetic disorder has raised over £52,000 to help fight it.

Tom Stafford's daughter Polly was diagnosed with tuberous sclerosis complex (TSC) WHEN, but with the help of his employer he has raised thousands of pounds to support families affected by the condition and helped fund vital research into the rare genetic disorder.

The sales manager from from Langford Village in Bicester said: “It’s a little like the philosophy behind the film ‘Pay It Forward’ - you do some good because you hope that what goes around, comes around. You hope that the money you raise will slowly but surely help Polly to have a better life.

“When Polly was diagnosed with TSC I think I was in shock for a year. Some doctors just don’t seem to get just how important this is to you – some clearly go above and beyond, but to some you can’t help but get the feeling that you are just a number. And that’s no good for me.”

Tuberous sclerosis, also known as tuberous sclerosis complex, is a rare genetic condition that causes mainly non-cancerous tumours to develop in different parts of the body.

For the past five years, Mr Stafford has tirelessly participated in fundraising events, including running a marathon and completing the Ride London to Surrey bike ride, to raise money for the TSA and has collected £52,423 so far.

He lives with wife Leanne, Polly and daughter Evie, who has recently been diagnosed with juvenile arthritis at just ten years old.

He said: “Leanne is very calm. She just gets on with trying to keep everything as normal as possible and giving us all the best life we can have. Evie, Polly’s big sister, is amazing as she’s taken on more responsibility than a lot of children towards her little sister.

“There’s no doubt that adversity does give you a bit of perspective.”

Mr Stafford has received continued supported from his employer Softcat, where he has worked for the past 17 years.

For six months, Polly has been undergoing everolimus, a pioneering treatment being offered by the NHS, which has shrunk a tumour in her head by half.