Reagann’s Blog

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 […]

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Posted on 31st January 2016

Joshua’s Blog

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. […]

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Posted on 30th January 2016

Jaxon’s Blog

Meet Jaxon  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 […]

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Posted on 28th January 2016