
Due to the life-threatening, life-limiting and progressive nature of this illness, time is of an essence for most children living with ROHHAD.
Significant funding is required urgently, for research to help save lives and
improve quality of life.
Joshua's Story ...
Before ROHHAD, for the first 6 years, Joshua was ...
- By age 5 he was biking 10 km and participating in lots of sports - By age 6 he was downhill skiing for 6-7 hours, rock climbing, cliff jumping, playing hockey, skating and playing many sports.
Joshua's health declines ...
- Gasping for air at night and incredibly loud snoring that had gotten progressively worse over the years. - Rapid decline in physical endurance and energy (e.g. hiking, biking, skiing, rock climbing etc.). - An obsession with food and constantly feeling intense hunger. - Overheating when not being active (super hot but no fever). - Urology issues that were identified by our family Doctor. - Unpredictable daily emotional meltdowns (each episode lasting 45-60 minutes and involving rage, anger, despair, sadness, anxiety). - Concentration and focus issues both at home and at school. - Crushing fatigue and exhaustion (which would have him sleeping 12- 13 hours each night and still unable to function the next day). - Chronic and continuous stomach pain. - Compromised immune system (constantly sick and picking up viruses).
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Navigating a diagnosis ...
ROHHAD which is what makes the diagnosis and treatment challenging.
Research could change this.
- In Spring 2016, Joshua was diagnosed with liver disease by Dr. Ling at SickKids, however, it did not explain the host of other symptoms Joshua was experiencing.
- In January 2017, our Doctor of Naturopathic Medicine, Dr. Michael Rahmann ordered comprehensive bloodwork. He advised us to seek immediate medical consultation.
- In August 2017, under the care of Dr. Jill Hamilton, Director of Endocrinology, Joshua was diagnosed with a "probable" ROHHAD diagnosis (to learn more about ROHHAD, click here)
ROHHAD which is what makes the diagnosis and treatment challenging.
Research could change this.
- Hearing this diagnosis for our precious little boy was something we could never have prepared ourselves to receive. It felt our family and world as we knew it had just fallen apart and we felt powerless to "fix it".
- As we learned more about the magnitude of ROHHAD, we found ourselves suddenly consumed with a range of emotions: shock, devastation, grief and fear. We also 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.
Living with ROHHAD - Joshua's DREAM is born
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Joshua's Inspiration ...
- As Joshua finds his life purpose, we have moved from initial feelings of fear, despair and sadness to those of hope, optimism and faith that there is a purpose.
- As a family we believe "Everything is Possible" and Miracles can and do occur.
- Over the past year Joshua has connected deeply to the stories of children with ROHHAD worldwide. In particular Joshua and our family have connected to Aaron Hunter and his mum Lisa who live in Scotland (video links below)
- Aaron, Lisa and family have been instrumental in forming the ROHHAD Association, raising funds for research, connecting ROHHAD families globally (via the ROHHAD Facebook page) and securing Robert Downey Jr. (Ironman) as an advocate for ROHHAD (to learn more about the ROHHAD Association, click here).
- This has inspired Joshua's desire to raise funds for the ROHHAD Clinic at SickKids in Toronto to help find a cure for all children living with ROHHAD globally.
- Joshua’s vision is to host a ROHHAD Family Gala in our community with a MARVEL theme as he loves Robert Downey Jr. and the Avengers (click here to learn more about our ROHHAD Family Gala).
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Watch Robert Downey Jr. Go MAD and JUMP for ROHHAD! |

Thank You to the ROHHAD Association for all your advocacy and
support. Together we can make a difference in the lives
of children and families living with ROHHAD.
To learn more about the ROHHAD Association (founded by Lisa, her son
Aaron Hunter and family in Scotland), click here
support. Together we can make a difference in the lives
of children and families living with ROHHAD.
To learn more about the ROHHAD Association (founded by Lisa, her son
Aaron Hunter and family in Scotland), click here