Help Millie get life-saving surgery in Germany
Millie has hypermobile Ehlers Danlos Syndrome - a genetic connective tissue disease that affects every part of her body. There is currently no cure for Ehlers Danlos and we lack proper medical treatment here in New Zealand.
As a result Millie has life-threatening vascular compression syndromes. She hasn’t slept through the night in over 3 years and weighs less than she did when she was 10. Even a sip of water causes her severe pain and nausea. Almost everything she used to enjoy doing is now impossible for her.
I can’t fathom how on earth Millie is still alive, let alone be smiling and positive. I guess illness and hardship either make or break us. In the midst of suffering and loss, she still manages to find joy and gratitude. People like her are rare and needed in our world.
I desperately want to keep my daughter alive and enable her to thrive.
For the past 5 years, I have been trying to find help. I believe our best option is to get Millie to Professor Wilhelm Sandmann in Düsseldorf, Germany. He is one of only a handful of surgeons in the world who is able to perform surgery to treat these compression syndromes.
This could be her miracle.
Surgery = $80,000
Flights and accommodation = $10,000 approx.
Additionally, she requires full-time care and will continue to need this for quite sometime as she recovers. I have been unable to work and will remain so for at least another year.
Pre-surgery 22 October 2021
We have received the news that surgery is postponed. Millie needs to gain more weight and get stronger. We are disappointed and frustrated. It has been difficult for Millie to re gain trust with the doctors, given that she was initially told that surgery would be October 19. She is going to try a feeding tube for 4-6 weeks. There is no guarantee it will be tolerated though. If not, she will need a central PICC line which is riskier and has more associated complications.
So we are having to move to an apartment today. It’s a very unsettling time for us. We have struggled with language barriers, lack of communication and cultural differences.
But Millie is nothing short of phenomenal. The pain she is enduring from median arcuate ligament syndrome compression is likened to that of stage 4 pancreatic cancer. And because of her Ehlers-Danlos syndrome she has been unable to find any pain medications that help.
She continues to be strong, brave and courageous. She is truly inspiring.
Thank you so much everyone for your kindness and generosity. We thank you from the bottom of our hearts ♥️
Thank you so much for your generosity and kindness. We are so grateful 🙏🤗
We are so grateful to you Fiona. We are so very sorry for the loss of your beautiful daughter. ♥️💕
Thank you very much 🙏🌈