Jaimee's Complex Medical Journey

20/09/2025

We are are very blessed to have Dr Fraser Burling as one Jaimees specialists. Well deserved
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The Outstanding Contribution to EDS ECHO Award honors individuals who have shown exceptional leadership and sustained commitment to expanding education, collaboration, and access to care for people living with Ehlers-Danlos syndromes and hypermobility spectrum disorders worldwide.

This year, we are proud to present this award to Dr. Fraser Burling, whose vision and dedication have greatly strengthened this global learning platform.

For more than six years, Dr. Burling has been a driving force in delivering EDS ECHO programs across the Australasia region, bringing together clinicians, researchers, and community members to share knowledge and improve patient care.

Through his leadership, EDS ECHO has become not only an educational resource, but a lifeline of connection and support for professionals and families navigating these complex conditions.

His work exemplifies the spirit of ECHO: moving knowledge, not people, so that expertise reaches every corner of the world.

01/09/2025

. 🎈🥳 HAPPY 2️⃣0️⃣th BIRTHDAY 🥳🎈
✨️💝JAIMEE 💝✨️

🌿 A sacred milestone. A celebration of life, love, and the quiet miracles that have shaped her journey.

This past year, we’ve watched her spirit bloom. God has gently led her through seasons of challenge, revealing strength she didn’t know she had. He’s peeled away what no longer served her—voices that clouded her truth, relationships that dimmed her light—and replaced them with clarity, peace, and purpose.

✨ She has grown in grace. She’s learning to stand firm in the truth of who she is, even when the world tries to tug at her roots. She’s no longer swayed by voices that diminish— she listens for the ones that speak life. She walks with quiet confidence, not comparison. She surrounds herself with those who reflect light, not shadows. And through it all, God has been her shelter, her strength, her steady guide. 🙏

🕯Jaimee has always carried a light that’s uniquely hers. She’s a giver—offering the last of anything without hesitation. She’s sensitive to beauty, moved to tears by kindness, animals, and quiet moments on screen. She’s trusting, sometimes too much, but always with a heart wide open. She speaks with passion, sometimes endlessly, and always with purpose. She has her own rhythm—her own way of doing things—and yes, her own brand of chaos. I call her my not-so-little tornado—I tidy, she trails behind, leaving a swirl of life in her wake. She doesn’t love crowds, but she loves deeply. She’ll stand up for others with fierce loyalty, and she’s learning to stand up for herself, too—with courage and grace.

🐾 And always nearby, Stella Jane—her silent guardian. The one who senses the storm before it breaks. Who barked when seizures came, who curled close when the world felt too heavy. She’s more than a dog. She’s part of the miracle. Even now, facing her own battle, Stella remains Jaimee’s steady companion—woven into every step of this journey.

We’ve learned how sacred it is to guard your heart. To choose peace over performance. To walk away from what dims your light—even if it once felt familiar.

📖 “...to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair.” — Isaiah 61:3

To Jaimee—your light is divine. You are becoming exactly who He created you to be. You are my walking miracle, I love you, I am proud of you and I thank God for you every day.

Happy Birthday 🎂 🥳 🎉

🩵💜💚🧡🦓

21/08/2025

. 🦶🦓 Surgery Update - Jaimee 🦓🦶 🩵💜💚🧡🦓

It’s been four weeks since Jaimee was discharged from hospital, and while the admission itself was one of the better ones overall, it came with its own set of challenges.

🩸The bleeding caused significant pressure and pain—enough to require a fentanyl PCA for the first time. Even though she was well cared for, Jaimee was ready to get out of there as soon as possible. Ideally, the team wanted her to stay another night due to ongoing bleeding, but a compromise was made: if there were any signs of blood, burning, or numbness, we’d head straight to ED.

🚑 She was discharged on a Wednesday. By Friday, the bleeding had returned, and we were back in ED. Her ankle was extremely swollen from the pressure, and the backslab was changed to relieve it. Thankfully, there’s been no bleeding since, and the ankle is healing nicely. It’s been 10 days since she was allowed to start putting weight on it again—a big milestone 🦶✨

But health-wise, things have been tough.

📉 Jaimee’s blood glucose levels have become a growing concern. She’s had intermittent issues since 2022, but the past few months have shown a noticeable decline.
Back in March, we had looked into getting a continuous glucose monitor (CGM) due to a string of concerning lows—thankfully, those improved at the time.

Her GP has seeked specialist advice, and with the recent drops and instability, the CGM has now become essential, which has been absolutely invaluable in tracking her levels and catching dangerous drops 📊💉

⚡There’s also been a huge increase in seizures—now happening daily. It’s taken a real toll. Some of these episodes have coincided with dangerously low glucose levels, adding another layer of complexity and risk.

🧵 We’re navigating this one day at a time, grateful for the tools we now have, and fiercely advocating for the support Jaimee needs. The prayers so many of you have offered—quiet, constant, and heartfelt—have been a source of strength. 🙏💜 Thank you for lifting her up in ways that go beyond what medicine can measure.
🩵💜💚🧡🦓

15/08/2025

💔😥 A Hard Update - Stella-Jane 😥💔 🐾 Jaimee's Silent Guardian 🐾

Some of you may not know Stella-Jane. She’s been with us since 2019, adopted from the pound when she was five years old — just as Jaimee’s health began to decline.
From the moment she arrived, Stella became Jaimee’s comfort dog🧸, her steady companion through anxiety and uncertainty.

But Stella’s role quickly grew into something extraordinary.✨️

Without training, Stella began to alert us. When Jaimee fainted, Stella would act like she needed to go outside 🚪— but instead of heading to the door, she’d lead me straight to Jaimee. Later, when seizures began, her response changed. She didn’t come get me — she barked. But it wasn’t her usual bark. It was sharp, urgent, different🔔. Enough to make me stop what I was doing and check. And there she was, standing watch over Jaimee.

She’s alerted us to fainting, seizures, and even when Jaimee vomited blood 💔. She doesn’t panic — she just knows, and she finds a way to tell me.

Stella-Jane has been a silent guardian, a medical alert dog, and a deeply intuitive soul 💖.

💔 Last night, we received devastating news.

Stella has cancer — a fast-growing sarcoma in her connective tissue. It’s located on her lower back, and she’s scheduled for surgery this Tuesday 🏥. The vet is hoping to remove it with clear margins, but it’s invasive and aggressive.

We’re heartbroken😥. And we’re holding onto hope.🌈

🙏 Please keep Stella-Jane in your prayers and thoughts. She’s been a quiet hero in our journey, and now she needs our strength.

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. 🩵💜💚🧡🦓🦓

Institute of Blood disorders

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. 💗
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Every

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