A MUM from Wigginton whose son has a rare genetic disorder has given an insight into how the condition affects him and their family.

Philippa Ward shared their story to raise awareness and mark global TSC Awareness Day today.

Thomas, seven, was diagnosed with tuberous sclerosis complex (TSC) when he was five-months-old. It causes non-cancerous tumours to develop on his brain, and this led to him having epilepsy and learning difficulties.

A pupil at Hob Moor Oaks School, Acomb, Thomas currently suffers a handful of seizures each week. Before he was given the drug everolimus, he was having up to eight severe seizures a day.

Philippa, 41, who has another son, Ben, said: “It has definitely changed our family life. It is not anything you ever expect, having a child with additional needs; there is a lot to learn. There is a lot of paperwork and the emotional strain is difficult. Every so often there is a curve ball you have to deal with.”

She described the past seven years as a “rollercoaster” for her, her husband David and their children. “It’s got to the stage now where we can take each day as it comes. Thomas is an absolute joy. He really is lovely and great fun to be around.”

But she said the seizures were 'quite distressing'. "Some weeks are worse than others. It is quite scary. We just try and comfort him and talk to him while he’s having a seizure.”

Philippa added: “He is very different to your typical seven-year-olds. There’s a lot of things he can’t do. He can’t talk. He can’t do a lot of daily functions. But he is developing, albeit slowly. He makes meaningful noises. He communicates with meaningful gestures."

She has thanked Hob Moor Oaks and the Tuberous Sclerosis Association for all their support and help for Thomas and their family.

In December last year, Philippa told The Press that "all our Christmases have come at once" after the NHS reversed its decision not to supply the drug that had transformed Thomas' life to patients in this country.