A ONE-YEAR-OLD boy is at permanent risk of developing tumours because of a rare genetic disorder – and tests have shown his mum has the condition too.

Philippa Ward, 35, of Wigginton, York, discovered her son, Thomas, had Tuberous Sclerosis Complex (TSC) when he developed epilepsy as a baby because of two brain tumours caused by the condition.

She said Thomas, now 20 months old, is on medication to help control the epilepsy but will require constant monitoring, including regular scans, to check for new or growing tumours in his brain and other vital organs.

Through genetic testing, she had discovered she too had TSC,although she had no current health problems.

She said she and her husband, David, were gradually coming to terms with the devastating news about Thomas, and spoke of the “tremendous” support and guidance they had received from the Tuberous Sclerosis Association (TSA), the only UK charity completely dedicated to helping people with the condition.

“The association has been brilliant,” she said.

“It is a huge comfort to know that they are there to step in and help us whenever needed, as Thomas’s future remains uncertain, although he is a very happy little boy. His big brother, Ben, who is three, really loves him and they get on really well.

“The support the association gives and the research they are funding brings us genuine hope for the future. We want to encourage local people to support this incredibly worthwhile charity which really helps people with TSC like Thomas and their families, every step of the way.”

She said the association, which has invested more than £10 million in support services and ground-breaking medical research, was asking people to hold Tea And Scones fundraising events, with more information available at www.tuberous-sclerosis.org.

Dr Jayne Spink, association chief executive, spoke of her delight that Philippa and Thomas were helping to raise awareness of TSC and support the association.

“For many of the people we support, just getting through the day is a huge challenge,” she said.

“We owe an enormous debt of gratitude to our supporters whose efforts enable the TSA to continue with its work – to provide vital support for families today, and the hope of better treatments and a cure for tomorrow.”