Help Millie fight Ehlers Danlos syndrome and its life threatening complications

Our beautiful eldest daughter Millie has recently been diagnosed with Ehlers Danlos syndrome (EDS) after 5 years of deteriorating health. EDS is a genetic connective tissue disorder affecting every part of the body. Millie has endured extreme pain, fatigue, nausea and has been misdiagnosed and traumatised as a result of the condition. Currently, her digestive issues are the main concern, her specialists believe she is suffering from severe gastrointestinal dysfunction. As a result, she is severely underweight and malnourished to the point her life is at risk.

Over the past 5 years, we have spent all we have and more trying to help our gorgeous girl. I have been unable to work for over a year in order to care for Millie, which has had a huge financial impact on our family. We have seen numerous specialists, had many unfunded tests, misdiagnoses and even had to look for help overseas in trying to find the cause of her ill health. In New Zealand, we have one doctor who specialises in treating Ehlers Danlos. Unfortunately, he is based in Auckland and so in order to see him each time we must travel from Dunedin. Additionally, due to Millie being a very complex case she requires gastrointestinal testing and treatment in Wellington.

At present we have been told it is likely that Millie with need a PEG-J tube surgically implanted to feed her, likely for life. This is obviously devastating and would greatly impact her quality of life. In the face of this huge challenge Millie has shown incredible resilience. At approximately 35kg she amazing and manages to keep up with her study in the hope of one day overcoming this and doing something good for the world. Despite her suffering she is one of the most positive people I know. We don't want her relying on a feeding tube forever. We are hoping to get a gastric pacemaker which is not funded or available in New Zealand. The pacemaker alone costs approximately $30,000 not including the cost implanting the device and we would need to travel overseas in order for her to receive this life-changing treatment.

Help us to not only save her life but get her the treatment she needs to thrive despite this awful condition.