A Scots boy’s friendship with a Hollywood star has paved the way for research to begin into one of the world’s rarest diseases.
Nine-year-old Aaron Hunter has ROHHAD – rapid onset obesity hypoventilation and hypothalamic dysfunction and autonomic nervous system dysfunction – a terminal illness affecting just one in 73million people.
It is a brain condition where messages fail to reach the other organs, so they “forget” to work.
There have only been 100 diagnosed cases in the world, five of which have been in Scotland. There is no cure and many patients die before they reach their teens.
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Aaron, from Alexandria, Dunbartonshire, formed a bond with Iron Man actor Robert Downey Jr after asking him to take part in a fundraising challenge.
The actor, 54, donated £150,000 from his own charity towards helping to find a cure.
The ROHHAD Association has now raised more than £300,000 and is sifting through applications from research scientists before granting its first £275,000 award.
Aaron’s parents Elisabeth and Ian set up the charity shortly after he was diagnosed with the illness at the age of five.
Their son wanted his hero, Iron Man, to lend a hand – so he sent him a video asking him to do a muddy puddle challenge – and the actor agreed.
Aaron came up with the idea because he used to love to run and jump in puddles – but problems with his heart, breathing and sight mean he can’t run any more.
Downey Jr carried out the challenge when the family travelled to London in March last year to meet the actor.
Aaron and the star had built up a strong friendship before their first meeting, phoning, texting and emailing each other.
Downey Jr has helped the family make a video explaining the illness and the need to find a cure.
In it, he describes Aaron as “a force of nature” and adds: “Aaron Hunter is an amazing young Scottish fellow. 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 called ROHHAD.”
Before jumping in a puddle, he turns to his wee pal and says: “I imagine a day when you and I could be covered in mud together.”
Aaron-Man, as his family call him, recently had surgery to have his colon removed.
He said: “When I had my surgery, I was in lots of pain. Robert texted me and cheered me up.
“Robert is the funniest guy I know and gives the best hugs. He has really been helping the charity.”
The actor’s reach has meant the charity has also managed to get in touch with other ROHHAD patients from around the world.
Elisabeth said when they set it up, they realised a cure was unlikely in Aaron’s lifetime.
But she added: “Robert’s input has allowed us to look at starting research far sooner than we thought, so now it might just be possible.”
● To donate to the charity, go to www.rohhadassociation.com .
