We are fundraising to get Maia to Germany for surgery so she can live a normal life again.
Manawatu / Whanganui
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.
8 weeks post-op, 4 weeks home! 15 May 2025
Morēna e te whānau, we have now been home from Germany for 4 weeks! The rest of our Germany trip went really fast, and time has really flown by while we have been settling into normal family life again, but I thought it was time to give a little update now that the page has closed.
The trip home from Germany was long and exhausting, but the reward at the end was seeing the other half of our little quartet waiting for us at the airport! The relief of hearing "Kia ora" from the flight attendants on our last couple of flights was also huge, as well as stepping back onto home ground. Jet lag, on the other hand, was brutal, and took a long time to recover from.
Since surgery 8 weeks ago, and after returning home, Maia has had a lot of wins. She is able to eat and drink, and is more mobile than before, which she feels has made the experience worth it. There is still a long process of recovery to go, but we are quietly celebrating the wins.
There are no words to express how grateful I am that you all made this happen. You have given Maia a chance at a normal life, and while this came at a significant financial and emotional cost, I honestly believe this is priceless. Knowing that we had such a supportive and caring community cheering us on from across the world also made the hard parts of the experience more bearable, so thank you.
You have our love and our gratitude.
Aroha atu, aroha mai,
Rebecca xx
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