August 2015 - ROHHAD Association

Superhero helping The real Superheroes !

Massive thank you to Robert Downey Jnr AKA IronMan for making my sons day and putting a huge smile on his face. Sending him a special photograph of Ironman telling Aaron he is Ironman ! Aaron was so happy receiving this special gift in the postimage as he is a massive Avengers fan he said ‘this is the best present ever !’ He is our own brave avenger battling the evil ROHHAD. Thank you so much for making him smile and giving him a precious memory. We of course had to watch Ironman when this arrived and Aaron said quite proudly ‘mummy he is the best avenger as he sent me a photo, he knows me now and maybe I can help them fight the bad guys one day !!’ Your a true hero Mr Downey x

Children helping Children

Our super brave ROHHAD children who battle daily to survive have a group of new ROHHAD heroes helping them. Lauren Hunter (Aaron’s big sister), has co-written a beautiful song for the ROHHAD children and she invited her friends from Singer Station School to help her perform the song. Lauren and the singer station children hope that their song will help raise awareness and much needed funds for medical research to help all the ROHHAD children and their families.

This is the song called ‘Light the World for You’ and you can buy it from itunes for 79p with all proceeds going to the charity. It is also available to buy on all major online music stores. If everyone you know and everyone they know buys this song research will begin soon in the UK. So please share it with everyone all your family and friends ask them to view it and support us by buying it. Children helping children ! they are true ROHHAD heroes. Inspiring ¬†( search ‘Light the World for You’ by Lauren Hunter to buy) ¬†Thank you for your support

Meet the ROHHAD ‘Superheroes’

Everyone of these beautiful children are our inspiration – some of them are angels watching over the other children now and some of them continue to fight daily against the Evil ‘ROHHAD’ Watch our video of the amazing children see who we are fighting hard for and then become a ‘ROHHAD Hero’ and donate today to help us find a cure Thanks

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