Run for Cody to Support Histiocytosis Research
From August-December 2021, I will be running 500km for charity; in loving memory of Cody Burns who passed away from a rare neurodegenerative disease earlier this year at age 10.
Cody’s story:
Cody was one of two people in the world to have two rare co-existing hystiocytic disorders; Rosai-Dorfman disease (RDD) & Langerhans Cell Histiocytosis (LCH).
Cody was diagnosed as a small child when he began losing his mobility and became developmentally delayed. Prior, he was an active and happy toddler.
I had the privilege of meeting Cody and his mum Michelle two years ago. Cody was 8 years old and already been taken off palliative care books three times! He was determined to fight his condition and keep enjoying life.
Cody lived with a PEJ and was nil by mouth. He was incredibly resilient, learning to swallow on his own. He attended school, where in Year 4 his hours were extended to almost full days! His reading, writing and fine motor skills were all progressing. His determination was above anything else I’ve seen.
Cody lost his battle this year after acquiring aspiration pneumonia. He was the kindest soul and always knew how to make anyone smile. The impact he had on everyone who knew him was incredible!
Histiocytosis is thought to affect roughly one to two out of 200,000 people each year.
I hope in creating this fundraiser, the donations can help fund research into management and treatment not yet discovered around rare diseases/Histiocytosis and help patients and their families to better understand and manage their condition
About the disease:
Histiocytosis, also referred to as Langerhans Cell Histiocytosis (LCH), represents a group of rare disorders involving specific cells that normally have important roles as part of the immune system. While the cause of LCH is unknown, LCH can frequently behave like cancer and so is treated by cancer specialists.
Histiocytosis is a generic name for a group of syndromes characterized by an abnormal increase in the number of certain immune cells called histiocytes. These include monocytes, macrophages, and dendritic cells.
A histiocyte is a normal immune cell that is found in many parts of the body. In histiocytosis, the histiocytes move into tissues where they are not normally found and cause damage to those tissues. These proliferating immune cells may form tumors, which can affect various parts of the body.
In Cody’s case, these cells attached to his brain stem, leading to a decline in his sympathetic and parasympathetic autonomic functions.
About the Fiona Elsey Cancer Research Institute:
The Fiona Elsey Cancer Research Institute conducts word class research into Histiocytosis.
Researchers at the Fiona Elsey Cancer Research Institute have made progress in understanding how a specific type of immune cell is involved in the development of lesions associated with Langerhans Cell Histiocytosis (LCH) lesions.
This research has been recently recognised and published in international medical journal, Clinical Immunology. It is hoped that these findings will lead to a better way to treat patients with LCH.
FECRI researchers and clinicians collaborate with others around the world to study this condition. The immunology-based research led by Professor Kannourakis at the Ballarat based Institute has advanced the understanding of LCH and created promising leads on how they can target the immune system to combat this
Thank you in advance for donating to my chosen charity and for taking the time to read
In loving memory of Cody Dylan Burns
2011-2021