Toby-Jay is six years old and lives with his family in Westcliffe-On-Sea. He has tuberous sclerosis, a rare condition that causes tumours to develop in different parts of the body. Toby-Jay also has autism, hyperactivity, hypermobility, and is non-verbal. He has refractory seizures and currently has over 300 a day. As mum Samantha explains, “He takes medication twice a day, plus melatonin, a hormone supplement that regulates sleep cycles. We’re waiting on a sleep study to help us further.”

Yet the condition is difficult to control. “Toby-Jay is on palliative care as he is drug resistant. He’s had brain surgery and we’ve explored a range of options but they’ve all failed to help him with his seizures. He currently has a Vagus Nerve Stimulation device (VNS).” VNS is a treatment used to help reduce the rate of seizures. It sends regular stimulations through the vagus nerve in the neck. As mum Samantha says, “We go to Cambridge every four to six weeks to alter the milliamps – the electrical current delivered to the nerve.”   

                                                     

Daily life for Toby-Jay

For Toby-Jay and his family no two days are ever the same.

“You don’t know what kind of day it will be. Even if he is having a good day, things can change so quickly. It’s all so unpredictable."

The most difficult aspect for us is keeping him safe. His seizures are severe and he has a range of different types. His most common types are drop seizures and tonic-clonic seizures.” Drop seizures refer to when a child or person’s body will suddenly become limp, whilst tonic-clonic seizures refer to the whole body losing consciousness, with the muscles turning stiff and limbs jerking quickly. They can effect bladder and/or bowels during the seizure, and those with the condition may also bite down on their tongue. They usually last between one and three minutes.

Samantha adds, “Toby-Jay’s mental age is around one to two years old. He is in pads day and night.”

Challenges for the family

As mum Samantha explains, “Due to being his full-time carer and having his little brother to look after as well, I have only just gone back to work for 12 hours a week as a mental health support worker. Even then it’s a challenge and I’m regularly physically exhausted. I have sleeping problems because I’m worried something will happen to Toby-Jay during the night. Thankfully me and his dad, Graeme, have an amazing relationship and can rely on each other which helps so much.”

“We have a personal assistant [PA] from 8.30am to 8.30pm once a week and we have support staff six hours a week. We are due to get some form of respite from Little Havens Hospice soon.”

                                                       

How we helped

“I first heard about Family Fund when Toby-Jay was in Great Ormond Street Hospital having brain surgery. Our first grant was for hospital visits and travel costs, as well as clothing and sensory toys to help development."

"It helped me so much. It meant I could stay with him, buy him clothes and support him while he was in hospital.”

The family’s second grant was for a family break. As mum Samantha explains, “We’ve recently come back from Butlin’s. We went Monday to Friday and despite his seizures being bad from Monday to Wednesday he really enjoyed himself. We were able to get half-board and we would not have been able to afford it without Family Fund.”

Find out more about our grants and how to apply