Written by Dennis | Gastroparesis advocate and father
My name is Dennis and my life was forever changed in 2015 when my daughter Jacinda was diagnosed with Idiopathic gastroparesis. Since then it has become both my and my family’s mission in life to one day find a cure for this horrendous and debilitating condition.
No parent or family member should ever have to watch their loved one starve to death, with constant pain, nausea and vomiting stopping them from consuming the food that will save their life. I have seen my beloved daughter waste away from a healthy 95kg down to a scant 49kg skeleton; an experience in which I was both terrified and helpless. Thankfully, her current medication has stabilised her weight to within a healthy range, however, she still battles the daily pain, lethargy and nausea leaving her unable to continue to work as a Registered Nurse.
Currently my daughter has a tube stitched into her neck, just above her heart (a Hickman’s Line) delivering her TPN (Total Parental Nutrition – a special type of ‘food’) straight into her bloodstream; one inserted directly into her stomach for nutritional feeds and a final venting tube to take out any of the secretions produced by her stomach when digesting the food. The risk of infection is so high, especially with the tube leading directly to her bloodstream that she has been in and out of hospital multiple times with severe infections.
We have been completely blindsided by this condition, which absolutely removes your entire quality of life – the reason we continue to fight every day to raise awareness for gp.
Thankfully we have been working alongside the Devonport Rotary Club and Western Sydney University’s Gastroparesis’ awareness and research program to increase the knowledge about gp in the community. So far I have been able to organise numerous fundraising activities such as events held at Evandale Football Club, Hadspen Cricket Club, a BBQ at Bunnings and Devonport Rotary Club. I also sell gastroparesis merchandise, organise Golf Days and bags of sheep manure for garden mulch in order to raise more funds for gp awareness and research.
I will do anything and everything needed to raise the awareness needed to find a cure for this horrendous and debilitating condition. I am not seeking sympathy for our family’s journey, but simply trying to get our story out there to the community as this unknown illness is a story that needs to be told.