Gogglebox star Dom Parker has opened up about the devastating reality of having a child with a serious illness.
Mr Parker and his wife Steph, who live in Sandwich, Kent, are known up and down the country for their hilarious take on the week’s TV.
But recently they revealed the struggle of looking after their 18-year-old son Max, whose complex form of epilepsy means he has 100 seizures a day. He is also autistic, which means he has the mental age of about six.
The Parkers are looking into the benefits of medicinal cannabis after it was legalised in the UK in November.
Mr Parker told Good Morning Britain today: ‘We thought it was the right time… and for us personally to understand what’s really going on with medicinal cannabis.
‘The law did change on November 1 – but it’s still not readily available.
Dom and Steph Parker (pictured left and right) are known for their appearances on Gogglebox. Their son Max (second left) has been chronically ill with severe epilepsy since he was four years old and still suffers over 100 seizures every day
‘Yes it’s legal now, but they’ve got to make decision about who’s going to supply it, who’s going to pay for it, who’s going to prescribe it, where you can get it from.
‘Setting up those protocols takes time.’
Describing their son as a ‘charming, beautiful, polite young man’, he revealed that his condition is so severe he is not aware of how much he is suffering.
He told the programme: ‘The truth of the matter is, I’m not sure max is even aware he’s suffering.
‘It started at four months as infantile spasms, which we managed to keep under control with medication.
‘But then at aged four it came back with a vengeance. He’s 18 now, but he’s probably trapped in mental aged 6, just stuck there.
‘He doesn’t complain about anything, he doesn’t talk very much, communication is very limited.
‘Every time he sees us, which is what, 128 times a day, he’s not feeling it and remembering it like we are.’
The Parkers (Dom Pictured on GMB today) are looking into the benefits of medicinal cannabis after it was legalised in the UK in November
In a Channel 4 documentary tonight called Can Cannabis Save Our Son? the couple will look into whether a medicinal dose of the drug could alleviate some of their suffering.
The best they can expect would be a cessation of his seizures altogether because the damage that has been done to his brain over the years is liable to be irreparable.
His condition closely mimics that of Lennox-Gastaut syndrome, a complex and life-threatening type of epilepsy.
In the film viewers first see Max during last year’s long, hot summer at the idyllic cottage in the New Forest where the larger Parker family gather for holidays.
Like many teenage boys, he is mad about sports and football, while showing amazing eye-hand co-ordination when playing cricket and tennis.
He is home from the special boarding school in Hertfordshire — one of only two in the UK, which cares for children with his type of rare illness and supplies 24-hour care.
His schooling and education is paid for by Kent County Council’s Social Department, as the family’s main residence is still in Sandwich, Kent near the Salutation Inn, the celebrated hotel they ran.
Max also has a trained, full time carer during school holidays, who is clearly devoted to him.
Kent County Council fund around five hours of this care per week for Max, while the Parkers themselves pay for the rest.
A new Channel 4 documentary will explore if medicinal cannabis will be able to help Max
Mr Parker says that after high profile cases like Billy Caldwell and Alfie Dingley they decided to step up their investigation into the drug.
Thirteen-year-old Billy Caldwell had his medicinal cannabis oil confiscated on his mother’s return from Canada, while the family of Alfie Dingley, eight, petitioned the government after they found his condition improved when given a cannabis-based medication in the Netherlands, where it is legal.
Both boys have now been granted licences to allow them access to cannabis, but elsewhere the controversial treatment can only be prescribed by specialist doctors in a limited number of circumstances.
With tonight’s documentary Steph and Dom want to give clarity to a subject which is confusing for everyone — even for the Parkers themselves, who have been scrutinising the cannabis and cannabidiol issue for years.
‘That is what you do if you are the parent of a chronically ill child,’ said Mrs Parker.
‘You are not online at midnight shopping on Zara, you are online at midnight doing this kind of thing.’
Steph and Dom hope to give clarity to the controversial subject of medicinal cannabis – as they hope it can help their son who has been chronically ill since he was four (pictured)
First goal? To help clear up some of the misconceptions about medicinal cannabis. ‘People say to us: ‘Are you going to give your child cannabis?’ No, we are not!’ she cries.
‘Medicinal cannabis is produced in laboratories and all the psychotics and hallucinogens, anything that some might regard as the fun stuff that gets you high, all that has been taken out.’
‘A bit like alcohol free lager,’ adds Mr Parker.
And after seeing Max suffer for so long, his parents are desperate to find out if cannabis could make a positive difference to his quality of life, even if they hardly dare voice their modest aspirations for his improvement out loud.
‘I would love to see him able to develop relationships and make friends with people his own age,’ says Mrs Parker.
‘I would just love to have a conversation with him,’ her husband adds.
Steph & Dom: Can Cannabis Save Our Son? is on Channel 4, 9pm on Monday, January 28