Jordy’s Fight with Crohn’s & Stem Cell Transplant

My friend Jordy is a resilient and tremendous 24 year old woman who has never known “normal” or “healthy”. She was diagnosed with severe Crohn’s Disease as a very young child and experienced illness from birth. For Jordy, being seriously ill is all she has ever known, spending her childhood, teen years and adulthood in hospital. She is hoping to head to Sydney sometime in the upcoming months for a Stem Cell Transplant as a last resort to allow her to live a long and fulfilling life. This is the only viable option at present.

The aim of this GoFundMe is to assist with the out-of-pocket costs associated with Jordy’s treatment & the transplant & it’s extensive recovery period that Jordy simply cannot afford on her own. We’ll detail those costs a little bit later! The hope is that the Stem Cell Transplant (also known as a Bone Marrow Transplant) will allow Jordy’s immune system to essentially “reset”, and that the new stem cells will grow without the urge to attack her digestive system like they currently do. The goal is drug-free remission, something Jords has not experienced at any point during her 24-year-long battle. The risks and mortality rate associated with transplant is incredibly scary and intense, but the benefits outweigh the risks. So let’s talk a little about Jordy’s quality of life at present.

Since starting this GoFundMe, Jordy’s quality of life has diminished significantly due to her health deteriorating so rapidly. She has undergone 8 surgeries in the last 6 months - one of which was to form a colostomy. Jordy has also since developed a rare extra-intestinal manifestation of Crohn’s Disease called Parastomal Pyoderma Gangrenosum which causes her immune system to eat away at the flesh surrounding her colostomy. Jordy has spent more time in hospital than at home over the last few months, and will likely continue this way until she is able to have her transplant. Until then, the main focus is symptom management & keeping Jordy as stable and comfortable as possible. Jordy is dependant on high-dose IV steroids, and within days of switching to oral steroids, her condition deteriorates and the disease attacks her body with a vengeance. She is now unable to work anymore and aside from small trips to coffee shops for her mental health, Jordy’s quality of life is diminished. So in saying this, I have decided to update the description of this page to include covering the ongoing costs of Jordy’s medical care prior to her transplant, and to help assist with her cost of living while she is so poorly. The transplant is the end goal here - but we need to get Jordy there first!

Jordy is living with refractory Crohn’s Disease - an incredibly aggressive and progressive form of the disease that is no longer responsive to conventional therapy. The disease aggressively affects her mouth, oesophagus, stomach, small intestine, rectum, joints, her eyes and now her skin. At age 23, she had failed every treatment available in Australia. This included high doses of steroids, immunosuppressants, chemotherapy drugs and 7 different biological immunomodulator drugs. She is currently also non-responsive to a drug not available for Crohn’s in Australia, that was specially granted by Flinders Medical Centre. Jordy is not eligible for most clinical trials due to rare complications of her disease ruling her out of the criteria. She spends most of her life in the hospital, in severe pain and unable to eat for the majority of the time. Jordy lives off liquid nutritional supplements and the occasional solid meal. Many people are not aware of the life-threatening nature of aggressive Crohn’s Disease that is non-responsive to treatment, it’s often known as a “pooping disease”. Jordy has had countless open bowel surgeries to treat bowel obstructions caused by the long-term damage to her bowel from uncontrollable disease.

Without this Stem Cell Transplant, Jordy’s future looks a little like this. As her disease is not responsive to medical intervention, she will require periods of IV steroids - to which she is currently dependant on (as soon as these are stopped, her disease continues to cause constant bowel obstructions). Steroids are not a long-term treatment. The constant bowel obstructions lead to further bowel resections, i.e removing sections of small bowel that are scarred/diseased and causing bowel obstructions. Here is the kicker, living without a small bowel is Not Compatible With Life. Jordy had 2ft of her small bowel removed within 8 months, and humans have approximately 20-22 feet of small intestine. I’ll let you do the math there. The consequences of not having the Stem Cell Transplant will mean Jordy will likely have a shortened life, to which her quality of life will continue to diminish as she approaches “Short Bowel Syndrome”. 

As a result of intense chemotherapy conditioning that she will undergo to destroy all immune cells and make way for the stem cell transplant, Jordy will be likely rendered infertile & will likely go into early menopause at age 24. The cost of harvesting and freezing her eggs is something she cannot afford, having struggled to afford her current medical costs let alone the thousands required for fertility preservation. At age 24, no woman should have to choose between their fertility and their life!

The purpose of this page is to raise funds for the following costs associated with Jordy’s treatment that are out-of-pocket and simply out of reach financially!

• Jordy’s overall medical expenses as described above due to the deterioration of her condition & health. 

Jords hopes that post-transplant, she will go on to study Medicine and become a doctor or surgeon, to hopefully be able to help others in her position living with refractory Crohn’s Disease. She studied 1.5 years of Midwifery as a pre-med degree but unfortunately had to undergo 2 bowel resections and was never well enough to continue her studies. She is such a bright and inspiring individual, never without a smile on her face. Jordy remains dedicated to advocating and educating others - and will continue to do so throughout her journey.

Please please please, if you have anything to spare - please donate to help this beautiful girl undergo treatment to hopefully help her live a long & fulfilling life! Thank you!