Raising Awareness

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

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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.....


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Emilee with her big brother and her daddy xx

Joshua’s Blog

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Meet Joshua he is 19 years old and one of our oldest living children diagnosed with ROHHAD.  Luckily, he is doing quite well. He is a senior in high school and works a part time job as part of a school vocational program. He does have specially trained nurses with him most of the time.

Joshua has been raising awareness in his hometown and across America for many years.  He featured in a documentary a few years ago now called  "Life or Death Battling to Breathe" : you can watch a film of it on YouTube the link is  -  http://youtu.be/2WHsdZAIM6Y

Joshua's mum will be blogging regularly on here to share with you all Joshua's battle with ROHHAD.

Joshua fills a lot of the ROHHAD families with hope he is an inspirational young man and the ROHHAD Association are so happy he and his mum have agreed to share with you all his story.  Stay tuned for more blogs from Joshua.


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Jaxon’s Blog

Meet Jaxon jaxon 1

Jaxon is 5yrs old and lives in Canada with his mum and big sister. He is a massive Superhero fan ! The photo above was taken last week on his 5th birthday.  Jaxon has been diagnosed with ROHHAD and his mum Shanel will blog on the website from time to time to allow our followers and supporters an insight into Jaxon's ROHHAD Battle.

Shanel has been doing all she can to raise awareness in Canada and Jaxon was recently on the news (click the link below to view the video)


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Jaxon has like all the children battling ROHHAD spent a lot of time in hospital fighting for his life.

Keep following our Social Media pages and check in on the website from time to time to hear and learn more about Jaxon and how brave and strong he is.  Shanel will be blogging soon


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