Meet Edwin – One of our inspiring ROHHAD Warriors this is his Rare Reality written by his mum Kim


Meet Edwin, one of our Inspiring ROHHAD Warriors, this blog was written by Kim Blyth-Polese his mum to help raise awareness for Rare Disease Day 2019 this is Edwin's #RareReality
"Having a child with a rare disease and how it affects our family :
Meet Edwin who grew up like any other child and then suddenly doubled his body weight. His team of terrific doctors made him undergo a multitude of tests until they found he had ROHHAD syndrome.
It has not been easy for him, very difficult at times however three years later we have learnt a great many things : first and foremost we try to live life to the fullest every single day, spending as much family-time as possible, living in the healthiest way possible; we have built ourselves a magnificent net of strong supportive people around us, around Edwin; we help Edwin go through scary tests by explaining everything as well as we can.
We founded as a family ROHHAD Association Belgium sister charity to ROHHAD Association and we work hard to raise awareness about ROHHAD and raising funds for research to hopefully find a cure but we cannot do it alone. So let's raise awareness : thank you for reading and please share, share, share not only our blog but all the other children's blogs and the video to help the ROHHAD children and their families. We need your help Thank you"


Lisa Hunter

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