This is Aaron 2 days before his 5th birthday (which he spent in hospital) after major abdominal surgery and 2.5yrs after the first symptoms of ROHHAD began.
Aaron is currently 5.5 yrs old he loves the Avengers and all the marvel superhero’s, little realising that he is our very own superhero already Captain BraveHeart ! He enjoys drawing and painting and loves to go to the movies. He used to enjoy football, dancing and swimming but sadly a decline in his condition means he can no longer run or do any physical activity above walking pace. He does miss being active very much however despite this and all the very difficult things he has been through he hardly ever complains and is always smiling. He loves to tell jokes and he makes his friends and family laugh every day.
Aaron dreams of being many things from working with his dad, to being an artist who travels the world. He tells us almost every day that he will be a super hero one day and that he will work alongside Thor, Iron Man and Captain America saving the world. We encourage his dreams and pray every day for a cure so that Aaron will reach adulthood and fulfil his dreams and ambitions. The reality of him reaching adulthood though is unlikely, unless research is done. He means everything to us and the thought of loosing him to ROHHAD is unbearable. We can’t loose him.
You can help. You can make a difference to Aaron and all the ROHHAD children. Please help us find a cure and improve treatments by donating today or holding a fundraiser for the ROHHAD association. Thank you so much for helping my baby and other like him.
Aaron’s mummy Elisabeth