A MUM has accused the NHS of putting a price on her three-year-old son’s life.

Toby-Jay Harding was born with tuberous sclerosis which is a rare condition that causes tumours to grow in his heart, brain and kidneys.

The condition, which affects one million people worldwide, has left him with multiple health problems, including global development delay, and autism. He is registered vision impaired and has sensory issues.

He also has about 50 seizures a day.

The condition is life-limiting, but mum Samantha-Jayne Harding, of Fleetwood Avenue, Westcliff, cannot bring herself to find out how long he is expected to live for.

The family were given a glimmer of hope when they heard last year that drug Everolimus could be funded by the NHS.

The drug shrinks the tumours and would be “life-changing” for the family.

However, the NHS has said the drug is too expensive and has refused to fund it.

The 23-year-old said: “Toby-Jay having this condition is hard. Very hard.

“I just want to be able to take him out to and do the things people usually do with their kids.

“He is non verbal as well so gets frustrated because he can’t communicate with us.

“However, is a very happy little boy.

“Sometimes when he has a very bad seizure I get really worried about him, he will come and give me a hug and comfort me when he comes around.

“He can make anyone laugh.”

The drug costs between £32,000 and £50,000 per year, which Samantha said is far less than the cost of kidney dialysis - and other care that her son and others will eventually have to have because of the condition.

She is encouraging everyone to sign a petition set up by the Tuberous Sclerosis Association calling on the NHS to reverse the decision.

She said: “This drug would be life-changing for us.

“It might mean that Toby-Jay would be able to start talking and not have seizures.

“The NHS is saying that the drug is too expensive, but I feel as though that in this decision, the NHS has just put a price on my son’s life.

“It’s not fair.”

To sign the petition, visit petition.parliament.uk/petitions/165674