Jaimee's Complex Medical Journey

22/07/2025

. 💔🩺 Bleeding Complication 💔🩺 ⚡️After Surgery⚡️

⚠️ TW BLOOD

Jaimee’s orthopedic surgery itself went smoothly, but several hours later an unexpected complication arose. She began experiencing 🔥
burning and numbness in her foot and leg—shortly after, blood was dripping from her backslab 🩸 and persisted through the night.

With incredible courage 💪, Jaimee managed the pain and distress largely on her own. She was supported with PCA pain relief 💉 and compression, which thankfully helped control the bleeding. She’s now asleep 😴, and we are so grateful for moments of peace after such intensity 🌙.

🙏 Lord, wrap her in healing and protection. Steady her spirit, calm her body, and bring restoration to every part that aches. Be near to those caring for her, and strengthen those who stand alongside her in love. Amen.

💐 Thank you to everyone who reached out, commented, and offered kindness on our last post. Your love, prayers, and support are deeply felt and truly appreciated. You help lift us through these moments. 🩵💜💚🧡🦓

22/07/2025

. 🙏💖 Prayer for Jaimee 💖🙏

🩵💜💚🧡🦓 As Jaimee heads into surgery today, we’re lifting her in prayer—asking for calm, courage, and divine protection. 🌿

Dear Lord, As Jaimee goes into surgery, may Your peace surround her like a soft blanket. Let her heart be still, her mind be calm, and her spirit be strengthened. We ask You, Jesus, to walk beside her—guiding every step, every breath, every moment. May the Holy Spirit fill the room with light and comfort, and may Your healing hands be upon the surgeons and care team. 🕊️

Let fear fall away like shadows at dawn, and let courage rise in her like a quiet flame. She is held in love, in grace, and in the prayers of all who care for her. You know her story, Lord—you’ve seen every tear, every triumph. Let today be a step toward healing, wholeness, and renewed strength. 🌸

Amen.

Thank you to everyone who’s praying with us today. Your love means the world. 💗
🩵💜💚🧡🦓

Followers

17/07/2025

. 🦶 Upcoming Surgery for Jaimee 🦶 🩵💜💚🧡🦓

🦓 Yesterday, Jaimee completed all her pre-op appointments and is now scheduled for ankle surgery this Tuesday. She’ll be having an ankle arthroscopy, modified Broström procedure, and peroneal tendon repair—finally addressing an injury that’s been impacting her life for six years.

🏨 She’ll need to stay in hospital for at least one night, which is understandably daunting.
It’s her first overnight stay since the long and traumatic admission in 2023, just before we left for Germany 🇩🇪 —a chapter that left deep scars and a lot of medical PTSD.

😔This is also the first time Jaimee’s having surgery under orthopedics, and while there’s still a lot of distrust from past experiences, we’re cautiously hopeful. The team seems thorough and kind, and we’re holding onto the possibility that this could be a turning point.

Thank you to everyone for your on going support 🩵💜💚🧡🦓

02/07/2025

💉 Iron Infusion Update for Jaimee 🩵💜💚🧡🦓

It’s been 8 days since Jaimee received her iron infusion. The good news is that it’s helped bring her iron and ferritin levels back into range, which is a positive step forward.

❌ Ongoing concern:
Her haemoglobin has dropped further since the infusion. We’re hoping it will improve over the coming weeks, depending on her ongoing blood loss 🩸

💡 What is haemoglobin?
It’s what carries oxygen in the blood. When someone is losing blood, they also lose haemoglobin

So even though the iron infusion helped her iron stores, her haemoglobin is still struggling because of continued blood loss

⚠️ New complication – severely low phosphate:
Some iron infusions can cause phosphate levels to drop — and unfortunately, that’s exactly what’s happened.

📉 Normal phosphate range: 0.8–1.5 mmol/L
📉 Jaimee’s level has dropped from 1.5 to just 0.4 — which is very low and needs to be treated carefully.

🔹💡 What is phosphate and why does it matter?
Phosphate is a mineral that helps the body
▪︎ make energy ⚡️
▪︎ build strong bones and teeth 🦴
▪︎ keep the muscles, heart, and nerves working properly ❤️‍🩹

Low phosphate can cause symptoms like fatigue, muscle weakness, bone pain, and in more serious cases, breathing issues or heart rhythm problems. This definitely needs to be watched closely and treated appropriately.

We’re grateful to be under good care and hopeful that with the right support, things will start to stabilise soon. 🩵💜💚🧡🦓

24/06/2025

🌿 Jaimee’s Health Update – June 2025 🩵💜💚🧡🦓

TW photo of blood clot

🩸 Today, Jaimee had another iron infusion to help manage her ongoing vomiting of blood/clots and chronic internal bleeding. This continues to be a major challenge we're facing. 💉

🔄 After initially being told her test results were negative, we’ve now been informed they were actually positive — so, in the coming weeks, Jaimee will begin treatment for SIBO (Small Intestinal Bacterial Overgrowth), with the hope that it will reduce some of her severe gastrointestinal symptoms. 🙏

🧫 What is SIBO?
SIBO happens when there is too much bacteria in the small intestine — where there should be very little. This can lead to:
🌪️ Bloating
🤢 Nausea
🥴 Malabsorption
🛑 Nutrient loss and fatigue

🧠 Your gut relies on both chemical and mechanical functions to keep bacteria in balance. When those systems don’t work properly, SIBO can develop.

⚠️ In Jaimee’s case, she has:
🔹 Intestinal dysmotility
🔹 Structural abnormalities in her small intestine
Both of which make her particularly vulnerable to SIBO and its complications.

💛 Thank you all for your continued support and care✨

21/06/2025

🩵💜💚🧡🦓 MEMORY

My beautiful brave zebra warrior. Jaimee is now in recovery. The surgery went well. There was no bleeding as such but there was oozing red fluid through out her body which required her to have either blood transfusion or more of the plasma, but her haemoglobin is stable.
The MALS compression was so severe and tight it took Professor Sandmann longer to locate it and he needed to do a large resection of the median arcuate ligament.

20/06/2025

🌍✈️ Two Years Ago Today – Life Was Saved 💛

Two years ago today, Jaimee underwent life-saving surgery in Germany after arriving critically unwell. She was severely malnourished, anemic, dehydrated, and vomiting litres of blood. Her body was shutting down.

The diagnosis?
Multiple abdominal vascular compressions—a rare but life-threatening complication of her genetic condition, Ehlers-Danlos Syndrome (EDS), a connective tissue disorder.

These compressions meant that major blood vessels supplying her digestive organs were being crushed, starving her intestines of blood flow. This caused extreme pain, relentless vomiting, and eventually nutritional and intestinal failure.

She was also battling severe Postural Orthostatic Tachycardia Syndrome (POTS)—a condition where her heart rate would spike dramatically. Before surgery, she was constantly tachycardic, dizzy, and unable to tolerate even the smallest movements without her heart racing.

Without the surgery, she wouldn’t have survived.

💔 The two years that followed were incredibly tough:
▪️ Ongoing seizures
▪️ Low or Non-detectable cortisol
▪️ Hormone failure (no estrogen or progesterone)
▪️ Severe fatigue, brain fog, and memory loss
▪️ Nutritional and intestinal failure
▪️ Vomiting blood, bleeding from the bowel and bladder
▪️ Chronic nausea, vomiting, dehydration, low calcium and magnesium
▪️ Joint dislocations, torn ligaments and tendons
▪️ Spine, hip, and pelvic dysfunction
▪️ Anemia and migraines
▪️ Partial hearing loss

But today, we choose to celebrate how far she’s come. 🌅

With the help of an amazing team of private specialists—vascular, gastroenterology, cardiology, rheumatology, genetics, dietetics and more—plus targeted support including IV hydration, electrolyte management, nutritional therapy, medication, and time to heal, we are finally seeing the results of that lifesaving decision.

Jaimee has made progress we once only dreamed of.

Her POTS symptoms have gradually improved—her heart rate is more stable, she is now able to tolerate light walking, and even some gentle exercise most days.

✨ In just the past few months:
✅ More energy and reduced fatigue
✅ Much less vomiting
✅ Better hydration and weight stability
✅ Clearer memory and mental focus
✅ Improved sleep and mood

She’s studying again, retaining information, spending time with friends, and reclaiming parts of her life that were once out of reach. She’s beginning to live again.

🎬 And something we never expected—Jaimee recently auditioned for a series of short films. She went just for the experience... and was cast as the lead. After filming, they loved her so much they wrote her character into more episodes. Her spark is returning. 💫

We still have a tough road ahead—orthopedic and gynecological surgeries are pending through the public system—but today, we pause and reflect on what this date means.

📅 June 20th will always be the day everything changed.
It’s the day Jaimee’s life was saved.

To everyone who’s stood by us, believed in Jaimee, and helped us fight for her when it felt impossible—thank you.

If we hadn’t gone to Germany, she wouldn’t be here today.

Today we honour survival, resilience, and the courage to keep going. 💛

09/05/2025

25/09/2024

Fantastic Olivia
Olivia’s Broken Stomach

Olivia, as the Young Enterprise Student Ambassador gave a powerful speech recently at the NZ Business Hall of Fame in front of many powerful names in business as well as our Prime Minister and his colleagues.

Olivia spoke her truth, our truth, the truth of those before us. Her words incredibly articulated and thought out; the message clear. We are so proud of you Olivia and thank you for your commitment to changing the current narrative for people living in this country with these conditions.

Please take a small break in your day to watch Olivia humble some of the most powerful people in this country.

https://vimeo.com/youngentnz/nzbhof-olivia-adie?share=copy

23/09/2024

🩵💜💚🧡🦓 This article came out a year ago. Although Jaimee is still very unwell, the surgery in Germany saved her life, giving her body the strength needed to deal with all that Ehlers Danlos keeps throwing her way.
🩵💜💚🧡🦓

19/08/2024

TW BLOOD 950mls
💔 Nothing changes
. if Nothing changes 💔

Once again we are faced with the traumatic challenge of Jaimee vomiting up large volumes of blood and being confronted with the reality that hospital is not really an option, as experience tells us, that should she present to the hospital the chances of her receiving care are very unlikely.

At the very most she may be given some fluids depending on who she strikes in ED, the most likely scenario will be being told it's anxiety or drug seeking and sent home without any investigations or medical support.

There are no words to describe how terrifying this is, with over a 6 year history of having big bleeds resulting in significant drops in her haemoglobin and blood pressure, including already having had a stomach perforation.

We are just so blessed to have such an amazing GP and a team of private specialists 🩵💜💚🧡🦓