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Terminally ill boy wins fundraising Pride of Britain award

Aaron Hunter recruited Robert Downey Jr to help raise awareness of his condition.

When Aaron Hunter, a terminally-ill young boy discovered he had won a Pride of Britain award, he said it should be given to another deserving child.

The selfless nine-year-old, who has helped raise more than £310,000 for charity, was awarded the Good Morning Britain Young Fundraiser trophy at the awards ceremony last week, which celebrates the achievements of remarkable people across the country.

Aaron, from Alexandria in West Dunbartonshire, has ROHHAD, an extremely rare and complex disease that affects the function of every single system and organ within the body.

The disease causes previously healthy children to gain weight and develop breathing difficulties.

There are just 100 known cases worldwide, 12 of which are in the UK.

Sufferers face a daily fight for survival and many patients die before they reach their teens.

Superhero-loving Aaron dedicated the award to other ROHHAD children.
Superhero-loving Aaron dedicated the award to other ROHHAD children. Pride of Britain

"We knew he was likely to have ROHHAD syndrome, we had known for a while but hearing those words and knowing there was no cure and that his prognosis was terminal was really difficult," explains his mother Elisabeth.

"I had this little five-year-old asking me why can't they make me better, why isn't there research, why don't we matter. I just didn't have the answers for him.

"That motivated us to do something, to show Aaron and all the other ROHHAD children that they do matter."

Spurred on to help other children, Aaron and his family set up the ROHHAD Association with the aim of finding the cause of the disease and eventually a cure.

At the heart of the charity is superhero-mad Aaron, who his mum calls "an ideas man" and regularly comes up with fundraising ideas to help raise money.

Inspired by the ice bucket challenge, which raised millions for Motor Neurone Disease worldwide, Aaron devised the Muddy Puddle Challenge, in which participants jump in puddles - something Aaron can't do due to his condition.

https://stv.tv/news/features/1380141-dear-iron-man-terminally-ill-boy-s-plea-to-meet-the-superhero/ | default

He then made a video calling on his favourite superhero, Ironman played by Hollywood star Robert Downey Jr to do the challenge.

In the video, he said: "I don't want any more of my friends to die. We need your help Ironman."

The actor was so inspired by Aaron's selflessness and desire to help others, he flew to Britain and met the schoolboy to do a Muddy Puddle jump.

Robert said: "As I got to know him more, I just got caught up in the spirit of his desire to help others like himself who have this extremely debilitating disease."

"Together they raised a staggering £150,000 and Aaron would be really annoyed if I didn't say that they didn't raise it, it was all the people supporting the campaign and the charity," Elisabeth said.

Attending the Pride of Britain awards last week was difficult for the youngster due to his condition, but he was determined to receive the award and dedicate it to other ROHHAD sufferers.

"Aaron's very poorly at the moment and his ROHHAD disease is very debilitating for him," explains Elisabeth.

"He's suffering a lot just now and going to the awards gave him something positive to focus on.

"I'm very, very proud of him for being able to go on the stage and accept the award and for him, the most important thing was dedicating that award to all of the other ROHHAD children."

'As I got to know [Aaron] more, I just got caught up in the spirit of his desire to help others like himself who have this extremely debilitating disease.'
Robert Downey Jr

His sister Lauren says she is proud of her younger brother's selflessness.

"Aaron is one of the most selfless people I know. He's very well respecting of other people's feelings and he puts other people's feelings before himself," she said.

Now having raised more than £310,000 through the Muddy Puddle Challenge, as well as other fundraising events, the ROHHAD Association have turned their attention towards research into the disease.

Elisabeth says that while the charity needs double the amount of money to complete it's first round of research, the team are confident in finding the cause for ROHHAD, leading to treatments for sufferers.

"We're still on a mission and that mission is to find a cure," Elisabeth adds.

"The Pride of Britain award is a phenomenal recognition for all that Aaron has managed to achieve.

"He is very poorly at the moment but he is still determined to make a difference."

That determination led Aaron to ask his mother to remind people that despite the cold winter nights, it is perfect puddle jumping weather

"He said 'please remind everyone that this is going to be a horrible miserable winter, lots and lots of rain so lets have some fun and go out and do the muddy puddle challenge and that they can still donate and help make a difference'," Elisabeth laughed.

For more information about ROHHAD, visit the ROHHAD Association website.

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