AN INSPIRATIONAL mum is on a mission to make happy memories with her son who has up to 50 seizures-a-day.

Samantha Segrave’s six-year-old son, Toby-Jay, was born with a rare genetic condition called Tuberous Sclerosis, which causes benign tumours to develop in different parts of the body,

She said: “Despite everything, Toby-Jay is one of the happiest boys you will ever meet, even though he is non-verbal.

“It’s all in his eyes, he doesn’t need to say anything to be understood. When I kiss him he rolls his eyes.”

Toby-Jay is a huge fan of rollercoasters and loves the cartoon Sofia the First - he is very fond of princesses.

The Segrave family would love to raise enough money to be able to hire out Kids Kingdom soft play centre, in Southend, for his birthday in June and keep filling Toby-Jay’s life with fun and excitement while they don’t know what the future holds.

Toby-Jay now has a vagus nerve stimulation pacemaker (VNS) to help cope with his seizures.

The small electrical device is placed under the skin of the chest, and attached to a wire that connects to a nerve in the neck. Bursts of electricity are then sent along the wire to the nerve every five minutes for 30 seconds.

His condition causes a range of health issues including visual impairment, global development delay, Autism, hyper-mobility, hyperactivity.

Toby-Jay also cannot speak.

Samantha, 26, who also has 18-month old son Joshua, with her husband Graeme, 31, praised her paediatrician, Dr Rachakonda for always being on hand to give support and how he has saved Toby-Jay’s life on several occasions.

Samantha said: “Toby-Jay has been in emergency resuscitation at Southend Hospital in the last few weeks - we have good and bad days.

“But knowing who everyone is when we are at the hospital takes a massive weight of our shoulders.

“Dr Rachakonda has been assigned to Toby-Jay’s case since he was born.

“It makes us feel like we are not alone as Toby’s dad and I can sometimes feel very lonely.

“The VNS is helping, but it still doesn’t stop the seizures. None of the medication he has been on since a baby has worked and CBD oil is our very last option.

“Toby-Jay is up most of the night because of the seizures and the lack of melatonin he produces - which helps the body sleep - although he does take supplements. When Toby-Jay was born, I was told he wouldn’t live past two years old but he is almost seven now. We just take each day as it comes and try and manage his condition as best as we can and keep Toby-Jay as happy as possible.”

If you would like to help Toby-Jay make memories or donate to his Gofundme page, visit