ROHHAD FIND A CURE

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 ...

A happy, healthy, highly active, positive, loving, kind and funny little boy with a zest for life and a love for family, animals and nature.
Physically active and fit as our family loves nature, camping and the outdoors:

- By 4 years he was hiking mountains for 4 hours and swimming for hours
- 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.

Eating a very clean, healthy, organic diet under the supervision of our family's holistic nutritionist.

Joshua's health declines ...

Between 6 and 7 years of age, Joshua's health started to decline rapidly.
In 2014, we knew something was very wrong as Joshua started to exhibit a number of symptoms that we could not explain:

- Rapid weight gain despite the same healthy eating and active lifestyle.
- 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).

Our family Doctor, Dr. Veronica Koopmans, thankfully took our concerns seriously and after ultrasound results revealed fatty liver disease, she supported our request to refer Joshua to the liver clinic at SickKids hospital.

Navigating a diagnosis ...

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)

- 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 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

Given the complexity of ROHHAD, Joshua is under the care of 10 different specialists at the Hospital for Sick Children in Toronto.
Given the magnitude of the ROHHAD diagnosis and that there is currently no cure, we decided to embrace numerous holistic modalities (e.g. Doctor of Naturopathic Medicine, reiki, healing sessions, meditation etc.). Thankfully we are experiencing some positive results in helping manage some of Joshua's multitude of symptoms (click here for a list of Joshua's Health Care Team)
From a very young age, Joshua has had a huge heart space for helping people.
A few months ago, Joshua shared with us that he wants to raise awareness and funds to help find a cure for his illness as he feels this will help other children and give his life purpose. We are honoured and thrilled to support Joshua.
We have created ROHHAD Find A Cure to help Joshua's dream of a cure become reality (to learn more about ROHHAD Find A Cure, click here).

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).

Learn why Robert Downey Jr. (Ironman) becomes an advocate for ROHHAD!

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