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

Meet Colby One of our Inspiring ROHHAD Warriors, this is his Rare Reality Written by his mum Janka

Meet Colby Luis Palomeque Marica 8 years old from Pennsylvania USA, one of our Inspiring ROHHAD Warriors. This is his blog written by his mum Janka. “Colby was born on a rainy Friday morning. Since his before his other ROHHAD symptoms began Colby has suffered from profound sweating, GI issues, recurrent fevers, hormonal inbalances, unexplained […]

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Posted on 24th February 2019