About ROHHAD Find a Cure



ROHHAD is a medical acronym for "Rapid Onset Obesity, with Hypoventilation, Hypothalamic dysfunction and Autonomic Nervous System (which controls involuntary actions such as breathing and heartbeat) Dysregulation”.  

ROHHAD is a rare, life-threatening and progressive illness for which there is no cure. Sadly, many children lose their lives to ROHHAD. To date there are only 100 children world-wide diagnosed with ROHHAD. Children with ROHHAD appear healthy at birth and the onset of symptoms does not begin until after 1 year of age. The symptoms can begin anytime from age 1 to age 7 and the median age for symptoms to begin is 3.

Funds raised through this donation page will support priorities related to ROHHAD Syndrome at SickKids. Thank you for your support!




Date

Starts at:  September 19, 2020 5:00 AM
Ends at:  September 19, 2020 1:00 PM

Location

,

Contact

Jenny Cooper
jcooper@jcconsulting.ca

Our Journey with ROHHAD


Before our son Joshua was diagnosed with ROHHAD, he was your typical happy, healthy, highly active, positive, loving, kind and funny little boy with a zest for life and a love for family, animals and nature.

Between 6 and 7 years of age, all this changed, and Joshua's health started to decline rapidly.

In 2014, he started to exhibit a host of debilitating health issues and symptoms including severe obstructive sleep apnea, very rapid weight gain, rapid decline in physical endurance, crushing fatigue, inability to regulate body temperature, compromised immune system, behavioural meltdowns and numerous cognitive challenges.

It was clear something was very wrong and after 2 years of navigating the medical world, we received the probable diagnosis of ROHHAD in April 2017.

A ROHHAD diagnosis is "probable" as there is currently no diagnostic tool for ROHHAD which is what makes the diagnosis and treatment challenging.  Research could help change this.

Given the complexity of ROHHAD, Joshua is under the care of 10 different specialists at the Hospital for Sick Children in Toronto. We are beyond grateful for the exceptional care Joshua receives at SickKids and that Dr. Jill Hamilton, Division Head, Endocrinology and Dr. Indra Narang, Director, Sleep Medicine, Respiratory Medicine have founded the 1st ROHHAD Clinic, to provide an inter-disciplinary and comprehensive approach for treatment of children with ROHHAD.

Though receiving this diagnosis was devastating, we found a strength we didn't know existed and as a family became determined to navigate our new life journey with a positive and strong mindset.



Before our son Joshua was diagnosed with ROHHAD, he was your typical happy, healthy, highly active, positive, loving, kind and funny little boy with a zest for life and a love for family, animals and nature.

Between 6 and 7 years of age, all this changed, and Joshua's health started to decline rapidly.

In 2014, he started to exhibit a host of debilitating health issues and symptoms including severe obstructive sleep apnea, very rapid weight gain, rapid decline in physical endurance, crushing fatigue, inability to regulate body temperature, compromised immune system, behavioural meltdowns and numerous cognitive challenges.

It was clear something was very wrong and after 2 years of navigating the medical world, we received the probable diagnosis of ROHHAD in April 2017.

A ROHHAD diagnosis is "probable" as there is currently no diagnostic tool for ROHHAD which is what makes the diagnosis and treatment challenging.  Research could help change this.

Given the complexity of ROHHAD, Joshua is under the care of 10 different specialists at the Hospital for Sick Children in Toronto. We are beyond grateful for the exceptional care Joshua receives at SickKids and that Dr. Jill Hamilton, Division Head, Endocrinology and Dr. Indra Narang, Director, Sleep Medicine, Respiratory Medicine have founded the 1st ROHHAD Clinic, to provide an inter-disciplinary and comprehensive approach for treatment of children with ROHHAD.

Though receiving this diagnosis was devastating, we found a strength we didn't know existed and as a family became determined to navigate our new life journey with a positive and strong mindset.


Joshua's Dream for ROHHAD Find a Cure

The next few years were consumed with surgeries, procedures and specialist appointments. At this time only our closest family and friends knew of Joshua’s ROHHAD diagnosis (so as to honour Joshua’s desire for privacy). All this changed in November 2019.

At the age of 12, Joshua shared with us that he wants his life to have purpose. He is inspired to increase awareness about ROHHAD and raise funds to help find interventions and a cure for children living with ROHHAD globally. It is in this moment that Joshua’s dream was born, and we founded ROHHAD Find a Cure to honour and support Joshua’s desire to live a purpose driven life. 

While it is an unexpected journey and challenging at times, we remain grateful for the gifts in our lives and have learned to live one day at a time. As a family we believe Everything is Possible and Miracles can and do occur.

We pray and visualize Joshua defying medical odds and choose to focus our energy on helping Joshua turn his dream of finding a cure into a reality.

If you would like to learn more about ROHHAD Find A Cure please click HERE

Thank you for supporting SickKids, check out their latest campaign video SickKids VS. One Million strong