"He's the happiest child in the world"
Kate Toohey's son James, who has Batten disease, has reached an age that she feared he wouldn't
For every family, a son's 12th birthday is a special occasion.
However, for one Liverpool mum, it meant a little bit more than most.
That's because Kate Toohey's son James, who has Batten disease, was told when he was diagnosed at age 3 that his life wouldn't last to between 7 and 12.
But he reached that milestone this year - and mum Kate puts it down to the NHS offering life-changing treatment from 2019 for children like James with the rare and deadly disease.
Batten's is an incurable illness which affects the nervous system - causing seizures, visual impairment, mobility loss and early death.
Kate campaigned for treatment to be brought onto the NHS - she called on people to sign a petition to be taken to parliament.
That was taken to Downing Street in 2018 and it was signed more than 300,000 times.
The deal to offer Cerliponase alfa was reached in September 2019 and is proven to extend the lives of youngsters who take it.
Kate said:
"He's the happiest child in the world. He has got some changes within himself, but it hasn't fazed him. He takes everything on and smiles through everything, nothing bothers him.
"I never thought he'd go to high school and he's just started Year 8 and it's just like wow, it's terrifying that he's getting so old now! It's such a proud moment.
"We had an incredible big party at home (for his 12th birthday). We had literally everyone that I can think of in my house and we made sure we celebrated and James knew that it was his day as well, he had a ball.
James sadly lost his sight and his ability to walk about two years ago, but Kate says it hasn't bothered him.
"He brightens everybody's day"
"He's so affectionate and so loving and so innocent, no-one can be sad around him. He brightens everybody's day.
"I never thought all these years later, nine years since being diagnosed, that I could sit and smile and have a pretty easy day-to-day life.
"We've kind of adapted as a little team and it's nothing to us now, we travel to get our treatment and there is little differences with him, but we do it together."
The treatment is part of a managed access agreement to be discussed in 2025.
Kate admits that while she's a bit nervous about that, she's very confident that the treatment will continue.
"When you look at the amount of children that are now on the treatment and how successful and how happy that every single one of them are and now that we don't go to Great Ormond Street Hospital no more, it's open around the country, there's different hospitals that are providing the treatment so it's making life easier for us Batten's families to get what we want and what our children need.
"I just don't see that could be took away. It would be very cruel if they did take it away from them, but I think the children are proving it for themselves that it's going to stay."
Kate has also paid tribute to well-wishers who have been asking after James, from all over the world!
"Sometimes when you're having those little down days and you are low, it does buck you up to know that there's someone, the other side of the world sometimes, that will message you and ask about your little boy!
"It's nice to know that James is able to give that influence to someone or been that incredible that he's stuck in somebody's mind and they care.
"I love the support"
"Keep them coming because it doesn't half make me happy and it makes me smile and I love the support and I'm very grateful to everyone in Liverpool and the country and even around the world throughout social media and things.
"That's what's got to us to where we are. Without that support from everyone else, we wouldn't have got them petitions and all those signatures without that support.
"I'm always eternally grateful for that."