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.
The countdown is on! 2 March 2025
Kia ora e te whānau! It's been a crazy few weeks of planning and organising, while also managing day-to-day life, so apologies for the radio silence since our last post. Thank you to everyone that has donated, every little bit has helped, as global rising costs have meant that everything has jumped around $20,000 in price. Surgery is now paid for though!
This week we were able to catch up with Matthew Dallas from the Manawatu Standard ahead of our journey to Germany. It's been great to have the Standard follow our progress over the last year and the awareness it has brought has been invaluable. The main thing I want to clarify this time, is that Maia has only had her NJ tube since 2023, rather than 2022 as stated in the article 😊
Yesterday marked the 1 week countdown until we leave NZ, and nerves are definitely starting to kick in for me. It's going to be a pretty brutal few days of travelling for Maia especially, but I'll update as often as I can.
Arohanui 💜
Thank you so much for donating John 💜
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