We are fundraising to get Maia to Germany for surgery so she can live a normal life again.
Ashhurst, Manawatu-Wanganui
At age 14, Maia's health started to decline. She had been a high achieving student, with a natural talent for art, drama, and writing. She has since had to withdraw from school due to severe pain, constant nausea, vomiting, and fatigue, with having had significant weight loss. Almost 4 years later she now relies on a naso-jejeunal (NJ) tube for nutrition and hydration.
Last year Maia was diagnosed with Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects the collagen production in the body and causes a lot of co-morbidities. Maia has recently been diagnosed with a number of rare conditions that are contributing to her pain and gastrointestinal symptoms which fall into the category of Abdominal Vascular Compression Syndromes (AVCs).
The AVCS that have been confirmed are SMAS, MALS, Nutcracker Syndrome, and May Thurner Syndrome. We have been advised by Maia's vascular surgeon that it is necessary for Maia to have surgery to release these compressions, to return and improve blood flow to her organs (particularly her kidney), allow her to eat and drink again, and to give her the opportunity to live a normal life.
Unfortunately there is currently no treatment or surgery options available in Aotearoa for Maia, and Germany is our best, and most cost effective option. It does still come with a significant cost however and we are unable to fund this ourselves. Without fundraising to cover the costs, Maia will not be able to get this surgery.
I am Maia's mum.
To cover the cost of surgery (quoted approx $100k- excl unexpected complications and medication), additional specialist imaging; travel to, from and within Germany; and accommodation and associated costs for Maia and I for the 5-7 week stay in Germany.
We made it!! 17 March 2025
Kia ora e te whānau, we have been in Germany for a week! The trip over here was brutal, involving 4 flights and 2 train trips, and a massive amount of exhaustion.
Just before we left we were told that scans and surgery had been brought forward a day, which rushed the process a bit. Maia had her scan in Leipzig, and then we took another 5 hour train trip to Dusseldorf to check into the clinic.
However once we arrived in Dusseldorf on Tuesday, we were told surgery had been pushed back until the following Tuesday due to admin issues.
So we have been hanging around in the clinic for the last few days, recovering from the journey over.
On Friday we were told that they had been able to bring surgery forward a day, so it is now tomorrow, not Tuesday.
We're hoping to still make it back to NZ within the planned time frame, but are very aware that if things don't go to plan, then we will need to delay our travel home.
At this stage though, please send all of your positive vibes for Maia as she finally has the surgery we have been waiting for for so long. Thank you all for your continued support.
Arohanui 💜
Thank you so much for donating John 💜
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.