January 2016 - ROHHAD Association

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

Joshua’s Blog

Joshua 1

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.

 

joshua 2

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)

http://globalnews.ca/video/2305670/rare-condition-causes-rapid-weight-gain-in-children

Jaxon 2

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

Thanks

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