Help us fund medical treatment for Maia not available in New Zealand
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.
Rebecca Lester's involvement (page creator)
I am Maia's mum.
Use of funds
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.
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Latest update
Fundraising update! 10 December 2024
Kia ora e te whānau, it's been a while since we posted an update! Life seems to be moving at a million miles an hour, and yet is still at a standstill in so many ways. A raffle set up by Team Ryan and Gifkins and an amazing group of sponsers was drawn, and raised a whopping $10,000 towards Maia's surgery! Congratulations to the winner, and huge thanks to everyone who took part in any way.
As we head into the holiday season, and approach the 1 year anniversary of Maia's diagnosis, I've been reflecting on all of the changes we have had over this year.
This time last year, we were preparing to head to Hamilton for the scans that would confirm what we had already suspected- that Maia had a number of Abdominal Vascular Compression Syndromes that were causing her debilitating symptoms, and severely restricting her quality of life. We knew that the treatment options available to her would be limited, and would likely come at what felt like an insurmountable cost. As a solo parent, there was simply no way that I could make this happen on my own.
A year on, with the help of our generous community, we have raised just over $122,000. It feels like we are on the home stretch, and that surgery will happen sooner rather than later.
You have all made this happen for us, and there are no words to adequately express how grateful I am for what you have all given for my daughter.
Have a happy and safe Holidays, and know that we are all so grateful for you all.
Aroha atu, Aroha mai.
Rebecca
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Thank you so much for your incredibly generous donation 💜
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