ROHHAD

Raising Awareness is Vital – Recent Article in Daily Record

We wish to thank the Daily Record and in Particular Amanda Keenan and Samuel Bell for helping us raise awareness of ROHHAD. The Daily Record has shared Aaron's story via the article below. Please read the full article. The headline highlights Hyperphagia, a symptom of ROHHAD that means the children never feel full and would eat and eat if allowed to do so. Aaron and all of the children affected by ROHHAD do suffer from Hyperphagia however they do not overeat. All of them are on very strict calorie controlled diets. To be very clear the obesity they suffer from is caused directly by ROHHAD itself not by overeating. The Daily Record do highlight this in their article and explain that Aaron is on a very strict diet and still gains weight in-spite of this. It also explains more about what ROHHAD actually is.

http://www.facebook.com/lisa.hunter.944/posts/693158027451648

 

 

 

Raising Awareness on TV

On Thursday the 10th of September Elisabeth Hunter and Lauren Hunter will appear on STV's the Riverside Show live show at 7pm. They will both be interviewed about ROHHAD and their son and brothers experience of ROHHAD and the impact it has had on their family, as well as the charity and how members of the public can help the children. Aaron will be in the greenroom as he does not wish to be interviewed but does want to go along and see Lauren perform 'Light the World for You' the charity single with all her friends from Singer Station school (of music and performing arts). This is a wonderful opportunity to raise awareness for ROHHAD which is vital to our children. The charity thanks the Riverside show and STV for the opportunity to raise awareness. For anyone not living in Scotland who wishes to watch the show it is streamed live online at www.STVPlayer and its 7pm UK time.

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

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ROHHAD Association is a SCIO. Charity number SC045645

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