Give Pam a second chance at life
Athenree, Bay Of Plenty
Pam, husband Jon and boys Benny (8yrs) & Ollie (6yrs) are a family from the Bay of Plenty. Prior to Pam becoming severely unwell in August 2021, she was active, adventurous, had a wonderful small business and her whole life ahead of her.
Now, in March 2024, after a grueling 2.5yrs and counting, Pam is fighting for her life and finally has some answers.
Pam has Ehlers-Danlos syndrome (classical; cEDS). EDS is a genetic connective tissue disease that affects her entire body. Pam is severely affected and suffers from co-occurring conditions, one of which is a confirmed diagnoses of the rare Abdominal Vascular Compression Syndromes (AVCS).
Specifically, Pam suffers from NCS (Nutcracker Syndrome), MTS (May-Thurner Syndrome), MALS (Median Arcuate Ligament Syndrome) and SMAS (Superior Mesenteric Artery Syndrome).
EDS and AVCS are extremely misunderstood in NZ and there is little to no treatment for it here. Health insurance is also of no use.
Pam battles daily with debilitating abdominal & pelvic pain, fatigue, migraines, tinnitus and nausea to name a few. She is malnourished and has been tube-fed via different methods since April 2022. Pam's quality of life is so reduced, she can barely make it out of bed these last few months. She is deteriorating quickly.
The only option is to undergo life-saving surgery in Germany, which comes at a huge cost.
For her full story, please search Facebook for "Pam’s Positively Full Life", as the space available in this description is very limited.
Pam is my sister
The cost of surgery, immediate after-care overseas, travel costs, further medical costs when home in NZ etc. Our main goal is ambitious; any funds, even if not reaching the full amount, helps immensely.
An update from the surgeon in Germany, and a Trivia Fundraising Night! 5 May 2024
Hi everyone! Thank you for all your unwavering support. We wanted to let you all know that Pam is in contact with the specialist surgeon in Germany, getting paperwork together for all the moving parts, in the hopes she can have the surgery this year.
What she did happen to find out during that contact, is after he reviewed her scans that were performed here in NZ, she does in fact have all 4 AVCS compressions (NCS (Nutcracker Syndrome), MTS (May-Thurner Syndrome), MALS (Median Arcuate Ligament Syndrome) and SMAS (Superior Mesenteric Artery Syndrome)). It's not too much of a surprise given Pam's symptoms and how much she understands her own health. But it does show how superior this incredible surgeon is compared to the knowledge here in NZ, for him to diagnose all 4 from just looking at the NZ scan (whereas here in NZ, she was only diagnosed with 2).
There is a further specialist also in Germany with far-superior technology for these types of scans, so Pam is in touch with him as well. Both this specialist, and the surgeon, work closely together for patients like Pam.
On another note, if you're keeping up with Pam's socials you will see that our Beats by Bingo FUNdraiser for Pam in Matamata next week SOLD OUT! We're so, so grateful for that and can't wait for the event.
If you missed out, Pam's Positively Fun Night of Trivia is happening in Waihi Beach on Saturday 18 May at 6.30pm - 10pm. Check out the flyer for more info!
Thank you so much Millie for your kind donation ❤️
Thank you so much Lisa for your donation! ❤️
Thank you so much Lauren for your support and kind donation ❤️🥹
Such an incredible act of kindness Sally thank you! Everyone loves a good coffee ❤️☕️
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