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Dear Iron Man: Terminally ill boy's plea to meet his superhero

Scots seven-year-old wants Tony Stark to help cure his friends of ROHHAD.

A young boy fighting a rare terminal illness has made a heartfelt appeal to his favourite superhero to save the lives of his friends.

Iron Man fan Aaron Hunter, 7, from Alexandria in West Dunbartonshire, shared a video of himself reading a letter he had written begging his hero to help him.

Diagnosed with ROHHAD, a syndrome that is potentially lethal and incurable, Aaron released the appeal on social media after one of his friends with the same disorder, Sedona Marie, passed away.

"He is a very clever boy and he became very distraught when she passed," says his mother Elisabeth.

"He told us that he doesn't want to die and he doesn't want us to forget him. We promised him we were doing all we could to help him and that his doctors were too.

"Aaron then said to me 'mummy I want to help the doctors for my other special friends because I don't want anyone else to die'."

Iron Man fan Aaron Hunter with his mother Elisabeth.
Iron Man fan Aaron Hunter with his mother Elisabeth. Elisabeth Hunter

Aaron struck upon the idea to launch a challenge, based on his love of jumping in puddles, and asked his friends and family to jump up and down in a puddle for one minute to raise funds and awareness for a cure to the disorder.

Word spread. X Factor star Emily Middlemas got her feet wet for the schoolboy as did Scotland's First Minister Nicola Sturgeon - known as "the big boss of Scotland" to Aaron.

In all, the young lad has so far managed to raise around £30,000 to fund the search for a cure.

But there is still one special set of people in particular Aaron wants to reach out to.

"He said to me he wanted to challenge his favourite hero Iron Man and the Avengers 'because they are the good guys and they will help us mummy I know they will'," says Elisabeth.

With his sister Lauren filming him and his mother on the floor holding up his letter so he could read it aloud, Aaron shared his plea to Iron Man with the world.

Aaron's letter was initially posted but he has had no reply.
Aaron's letter was initially posted but he has had no reply. Elisabeth Hunter

Aaron's letter

Hello, my name is Aaron Hunter and I need to speak to Iron Man.

Iron Man if you see this I really, really need your help.

I have a very bad disease called ROHHAD and it's really hard sometimes because it is rare. The doctors don't have a cure yet. Some of my friends with ROHHAD have died.

I don't want any more of my friends to die. We need your help Iron Man. I am trying to raise awareness and money to help my doctors find a cure.

Iron Man I had an idea last year and I need your help. I wrote a letter to you and all the Avengers, but I don't think you got it because you haven't done my challenge yet.

ROHHAD is evil and I need your help to defeat it. I really want to save my friends. Can you please help me and do my 'go mad jump for ROHHAD' challenge.

Loads of other people have done it. I have loved watching their videos but we still don't have enough money so I really need your help.

My mum says you might be coming to Scotland soon. Can you please come and see me so I can talk to you about it?

I really, really need your help. Please help me Iron Man. I love you and I want to become a superhero like you.

Aaron's video appeal has since reached more than half a million views since it was posted in early February.

Media outlets have pledged to share his story as has the When you Wish Upon a Star charity which helps to grant the wishes of children living with a life threatening illness.

"To him the characters are real, he doesn't quite grasp the whole actor thing," says his mother. "He doesn't know of Robert Downey Jr, he just believes there's a Tony Stark.

"He believes so much in them and I don't want to take that magic away from him, especially now with everything he's going through."

A very rare syndrome, affecting approximately only 75 cases worldwide, ROHHAD is a life threatening disorder that presents in children after the age of 1.5 years old.

The term ROHHAD is an acronym for Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation.

Aaron has received a photo autograph from Superman Henry Cavill.
Aaron has received a photo autograph from Superman Henry Cavill. Elisabeth Hunter

Described as "a cruel and complex disorder" it severely impacts quality of life. For some sufferers, the condition can be terminal and children living with ROHHAD face a daily fight for survival.

"The chances of Aaron developing ROHHAD was one in 73 million," says Elisabeth.

"The past few years have been incredibly difficult for him as it has taken its toll on his body. He has spent more than two years in and out of hospital battling to survive in Intensive Care, having various invasive investigations, and surgeries.

"He has gone from a healthy toddler full of life and energy to using a wheelchair, taking various medications and injections and also relying on a ventilator and oxygen to survive each day."

An image of Aaron his mother often shares to raise support.
An image of Aaron his mother often shares to raise support. Elisabeth Hunter

Aaron, though, tries his best every day to be happy and takes inspiration from the superheroes he loves.

His bedroom has Avengers wallpaper and all his hero figurines are lined up on his window near to his bed so he can see them.

The ventilator he was to wear to help him breath he says is just like Iron Man's mask.

"He says it gives him superpowers," says Elisabeth. "He's a brave wee boy but he's just spent a week in hospital. I feel as though we're running out of time and I just want to make this happen for him."

Elisabeth has already tried to contact Marvel and has received online support from fan sites.

Her hope is that Robert Downey Jr will notice Aaron's letter in some way and perhaps send a message to her son.

"Seeing his wee face falling when they told him he couldn't get well again was horrendous," she says.

"He keeps telling me that Iron Man has definitely not not seen his letter yet, because if he had, he would have come to help him.

"I've told him Iron Man is out busy saving the world, and I can see him trying to put it all together.

"I'm worried he might start not to believe in them anymore so I feel it's my job to help this happen for him now.

"One day soon it will hit for him if we get that far, but right now he believes."

Aaron managed to convince FM Nicola Sturgeon to jump in a puddle for him.
Aaron managed to convince FM Nicola Sturgeon to jump in a puddle for him. Elisabeth Hunter

Aaron's video has already been re-tweeted by celebrities including Miranda Hart, Nick Knowles, Kaye Adams and Great British Bake Off winner Nadiya Jamir Hussain.

Elisabeth is now hopeful that Aaron's letter will eventually reach the man she believes can make her son the happiest little boy in the world.

"Aaron has a dream that I am trying my absolute best to make a reality before we lose him," says Elisabeth.

"He is desperate to reach his beloved Iron Man and continues to talk about it every day.

"It is breaking my heart that I haven't been able to make it happen. I don't want to take away the magic of his heroes from him.

"I want to give Aaron the most amazing memories that will last him for the rest of his short life and also just as importantly to help him achieve his plan to tell everyone about ROHHAD.

"I don't want to ever lose my son, but I know the reality is he is unlikely to reach adulthood and that is why I am doing this. I am running out of time to make his dream come true."

For more information on the disorder or on how to support Aaron's cause please visit the ROHAAD website.

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