Our Blog / Latest Updates

Colby’s Blog

colby 1Meet Colby, A beautiful strong young boy who was diagnosed with ROHHAD in April 2015.  Colby loves many things in life, including trains, dancing, singing, sports and the water!  If he could he would spend all day in the water.  Thankfully for now Colby's breathing difficulties do not affect him whilst awake so he is very active when he is able to be and he loves it.  Hopefully his ROHHAD will not decline and restrict Colby from doing what he loves the most; Sports.

Without medical research Colby may very well decline and have to be restricted in exercise in the future to keep him safe.  Thankfully for now that is not the case.

Recently Colby and his mum raised Awareness for ROHHAD in their home state of Pennsylvania USA and the state declared November 17th as their ROHHAD Awareness Day.

Colby 3

Colby's mum will be blogging regularly about him and his life and battles with ROHHAD.  These will begin from next week.  In the meantime we simply must share another photo of this remarkable young boy.

colby 6


‘Angel’ Emilee’s story – The beginning; written by her Dad Charlie

Emilee 1

Emilee Rae Cesnick 10.14.1997 - 12.30.2014         

My lovely beautiful daughter Emilee left us to be an Angel on Dec 30 2014.

Emilee had a syndrome called ROHHAD which was the main cause of her passing; complications arose due to ROHHAD.

She was born Oct 14 1997 my second child my lovely only sweet daughter she was so cute and what a great baby.  Always laughing  and smiling and of course crying as babies do.   By the time she was 1 it was just her, my son Anthony who is 2 years older, and I on our own.

I was doing my best to raise them and I think I did a good job. She loved to be read too, so very much and would listen to all stories about anything. She would always ask me for a bedtime story when she learned to talk ! and at this age all was normal. No clues then that there was anything wrong with her body at all. By the time she was 2 she was on track reaching milestones, as a child her age should be.

Emilee loved to go on walks and talk and as I said listen to stories any that I would tell her. She loved going outside to play and playing in the play ground we would go there at least 3 times a week . She loved running around playing with other kids; she was just such a lovely happy little girl and the light of my life.

At 3 years old she started preschool but that is also the year she started to gain weight.  At first I didn't notice it and her first year in school was great she was so popular and all the kids loved playing with her and wanted to be around her. The thing is by the end of that year you could really tell that she was gaining weight she had gained more than a hundred pounds in one year. She went from normal weight to being very overweight and nothing in the way I was feeding her caused it; this is before they knew what ROHHAD was they did not even have a name for it then or know anything about what was going on and why she was gaining weight .

Some Doctors said it was my fault they thought it was her diet; what i was feeding her because that is all that seemed to be going on at first.  The rapid weight gain is now known as the first sign of the disease ROHHAD which stands for  Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation.

Then she started her second year of Head Start school she was so smart learned everything so fast . As for other kids though since she was bigger not so many wanted to be around her now . She did not notice so I was glad about that but I could see how the other kids were looking at her and laughing behind her back.  It was very hard not to say anything to them but I did not say a word; I just wondered what was going on with her body.

Now it was time for her to start regular school and she did so good for the first couple of years. So clever, she got top marks or the best grades in everything but as time went on more and more problems developed....... to be continued.....


Emilee 2

Emilee with her big brother and her daddy xx

Reagann’s Blog

Reagann 3

Meet Reagann she is a beautiful and remarkable young girl who lives in the state of Missouri in America with her mum, dad and family. Reagann is 7yrs old now and has been battling ROHHAD since symptoms first began aged 2.  Diagnosis for Reagann  came after 2 long years were she had to battle very hard against many of the symptoms of ROHHAD, including cancer.  Fighting hard is in her blood and in her spirit like all of the ROHHAD children Reagann has had to fight very hard many times.

Her mum BJ and all her amazing family and friends have fought hard to help raise awareness in Missouri and in the USA.

They even have an official ROHHAD Awareness day in the state of Missouri; which is the 7th of May. This took a lot of work to achieve and is a day the charity will recognize this year with a fundraiser.

awareness day 7th may

Here is a copy of a newspaper article that was written about Reagann as part of the ongoing work BJ has done to help raise awareness.  Continuing that work BJ will be sharing Reagann's  story with you all via her blog on the ROHHAD Association website and FB pages and @ROHHAD_GLOBAL on twitter.  Follow us and get to know the children as we blog daily about a different child.  Thank you to all of you for your continued support.

Reagann in paper article

This Campaign has ended. No more pledges can be made.