Raise funds for ROHHAD research
Donation protected
Hi Everyone,
We are mum and dad to two beautiful children aged 8 and 11. Our youngest daughter Evie was diagnosed with ROHHAD at the age of 3. ROHHAD (Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Nervous System Dysregulation) Syndrome is a cruel, complex disease that severely impacts quality of life. It is an extremely rare orphan disease affecting only 150 children worldwide. There is no known cause, no cure and the children diagnosed with ROHHAD are unlikely to reach adulthood.
Evie is now 8 and despite all the invasive investigations she has endured and all of her ongoing treatments, she is a pretty happy girl who loves building sandcastles and riding horses. We are grateful for each day with have with Evie because one of the hardest things with ROHHAD is the not knowing what will happen next.
Our aim is to raise awareness and funds for medical research which will improve treatment options and we hope it will eventually lead to finding a cure, saving the lives of these beautiful warriors. We are so grateful and thankful for everyone taking part in this challenge. Please give what you can, we appreciate all your support.
Mel and Paul
We are mum and dad to two beautiful children aged 8 and 11. Our youngest daughter Evie was diagnosed with ROHHAD at the age of 3. ROHHAD (Rapid Onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Nervous System Dysregulation) Syndrome is a cruel, complex disease that severely impacts quality of life. It is an extremely rare orphan disease affecting only 150 children worldwide. There is no known cause, no cure and the children diagnosed with ROHHAD are unlikely to reach adulthood.
Evie is now 8 and despite all the invasive investigations she has endured and all of her ongoing treatments, she is a pretty happy girl who loves building sandcastles and riding horses. We are grateful for each day with have with Evie because one of the hardest things with ROHHAD is the not knowing what will happen next.
Our aim is to raise awareness and funds for medical research which will improve treatment options and we hope it will eventually lead to finding a cure, saving the lives of these beautiful warriors. We are so grateful and thankful for everyone taking part in this challenge. Please give what you can, we appreciate all your support.
Mel and Paul
Organizer
Melinda Richter
Organizer
White Rock QLD
