A young muscular dystrophy sufferer met the Prime Minister in a bid to draw attention to mental health care.
Archie Hill, who successfully campaigned for better access to a life changing drug Translarna, was invited to Downing Street just before Christmas to watch No.10 turn their lights on.
The Hill family from Chalfont St Peter feels strongly about better psychological support for families, and the visit came just a few weeks before Theresa May outlined plans for better mental health support.
She gave a speech at the Charity Commission on January 9 which had a particular focus on children and young people.
Archie’s mum Louisa, who is a trustee of charity Muscular Dystrophy UK, said: “Archie recently Googled his condition and since then things have spiralled as he keeps asking questions that have been really tough to answer.
“It took us four months before we could see a counsellor, that support really helped the whole family and makes a real difference.
“We believe that support should have been there from the start, rather than us having to push for it.”
Speaking of the visit she added: “[Theresa May] chatted with [Archie], knew exactly who he was and said she had heard all about him.
“That was really good.
“I didn’t think I realised how much he’s done over just 18 months.
“It’s incredible what he’s done - the things he’s had to deal with , it’s been phenonimal.
“I’m so proud of him, the fact that he’s made so many children happy.
“We got a video from another child who said thank you to Archie and said it was the best present.
“It makes it all worthwhile.”
Robert Meadowcroft, chief executive of Muscular Dystrophy UK, said of the Prime Minister’s announcement: “We welcome the Prime Minister’s plans to transform attitudes to mental health and proposals to improve support in the NHS, schools, the workplace and the community setting.
“It is clear from the experiences of people with muscle-wasting conditions across the country that there are significant gaps in emotional and psychological support at diagnosis and in the months and years afterwards.
“As part of the government’s drive to improve mental health services, we call on the Government – and devolved administrations – to ensure that there is equitable and sustainable emotional and psychological support provided by the NHS for people with rare and progressive muscle-wasting conditions and their families.”