AaronMans Own Blog Written By Aaron Hunter for Rare Disease Day 2019 this is His Rare Reality Please Share

Meet Aaron or as many of you may know him as AaronMan 💪 he is one of our Inspiring ROHHAD warriors and he himself has written the blog below for you all to read, (well he told mum what he wanted to say and then watched carefully as she typed it for him making sure […]

Continue Reading....
Posted on 28th February 2019

Savannah’s Blog – Her Rare Reality Written by mum Sabrina for Rare Disease Awareness Day 2019

Meet Savannah one of our Inspiring ROHHAD Warriors; this blog was written Bg Savannah’s mum Sabrina for Rare Disease Day 2019 – This is her #RareReality “Savannah was born on March 27, 2007 at 7 lbs 11oz. She was a happy and healthy baby and we were absolutely loving life. Savannah was our third child […]

Continue Reading....
Posted on 21st February 2019

Addison’s Blog – Her Rare Reality Written by mum Angela for Rare Disease Awareness Day 2019

Addison before ROHHAD Above My Miracle baby Addison was born in December of 2008. She had a rough start to life as she was a sole surviving twin at just 6-8 weeks gestation. During this time they had run all the normal tests and found that I was a high risk for having a baby […]

Continue Reading....
Posted on 19th February 2019