Meet Kouya One of Our Inspiring ROHHAD Warriors – this is his Rare Reality written by his mum for rare disease awareness day 2019

Meet Kouya one of our Inspiring ROHHAD Warriors, this blog was written by his mum for rare disease awareness day 2019 this is Kouya #RareReality “KOUYA was born in January 2011. A little petite baby weighing 2,800 g height 49 cm he was very healthy. He was walking at 10 months old and was a […]

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Posted on 26th February 2019

Meet Chance One of Our Inspiring ROHHAD Warriors- blog written by his mum Amy this is his Rare Reality

Meet Chance one of our Inspiring ROHHAD Warriors this blog was written by his mum Amy to help raise awareness for Rare Disease Day 2019 – This is Chances #RareReality “In September of 2003 my life changed drastically. I gave birth to a miracle! Chance was born with several rare disorders including Septo Optic Dysplasia, […]

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Posted on 26th February 2019

Meet Harper, One of Our Inspiring ROHHAD Warriors, This is her Rare Reality Blog written by Mum Chelsey

Meet Harper one of our Inspiring ROHHAD Warriors, this blog was written by her mum Chelsey to help raise awareness for Rare Disease Day 2019 this is Harpers #RareReality “Harper Pursley is 6 years old and lives in Rathdrum, Idaho. Shortly after her 4th birthday we started noticing changes in her. She gained about 25 […]

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Posted on 24th February 2019