Help Clare Fight for Quality of Life

Hi, my name is Eleana, and I’m Clare’s NDIS support worker. I’m reaching out on behalf of Clare, a 39-year-old single mother of three beautiful children with special needs. Clare has always been an incredible, devoted mother, flourishing in her role and providing unwavering care for her children. But her life took an unimaginable turn when Ehlers-Danlos Syndrome (EDS) rapidly stole the life she knew from her.

EDS is a debilitating genetic connective tissue disorder, and Clare battles it along with many severe comorbidities, leaving her permanently disabled and reliant on a feeding tube. Her daily life is consumed by constant, excruciating pain, severe fatigue, and debilitating symptoms, caused by:

- Severe gastroparesis and gastroptosis, where her stomach has become paralysed and prolapsed into her pelvis.

- Postural Orthostatic Tachycardia Syndrome (POTS), causing extreme dizziness, syncope & seizures.

- SMA syndrome, chronic gastritis, and severe gastroesophageal reflux.

- Bilateral internal jugular vein compressions, which cause severe dysautonomia and severe intracranial hypertension.

- Allergies

- Chronic joint dislocations and subluxations, including cervical instability that will require surgical intervention & possible fusion of the spine.

The internal jugular vein compressions (known as Stylojugular syndrome) are another rare complication of EDS, contributing to Clare’s debilitating migraines and neck pain. Clare urgently needs to travel to Sydney to undergo specialized surgeries to address these compressions, performed by the only ENT surgeon and neurosurgeon currently offering this life-altering procedure. Each surgery costs $4,500 out of pocket, and she will likely need two separate surgeries to address both sides of her neck.

In addition, Clare suffers from frequent jaw dislocations, requiring surgery to stabilize her jaw, and she will need to have all her teeth removed due to chronic vomiting caused by her gastrointestinal conditions.

Despite everything she endures, Clare continues to be a pillar of strength and love for her children. However, the financial burden of these necessary surgeries is overwhelming, and Clare needs our help.

Your donations will go directly towards Clare’s medical costs, including; Two Stylojugular surgeries ($4,500 each), and multiple other surgeries needed.

Beyond the overwhelming cost of surgeries, Clare is also grappling with the rapidly increasing cost of daily living. As a single mother of three special needs children, she not only faces the rising expenses of raising her family, but also the never-ending medical bills that continue to pile up for both herself and her children. From specialized therapies, equipment, medications, and constant travel for medical appointments, the financial burden never seems to ease.

Your support will also help Clare manage these essential daily expenses, ensuring her and her family can continue to receive the care they deserve. Every donation will make a huge difference in helping Clare cover the mounting costs of living, while she fights through her own medical challenges.

With your help, Clare can focus on what matters most: her health, her recovery, and being there for her children. Thank you again for your generosity in giving Clare and her family hope during this incredibly difficult time.

Any amount you can give will bring Clare one step closer to relieving her pain and improving her quality of life. Together, we can support Clare through this battle, giving her hope for a future where she can better care for her children and find relief from her debilitating symptoms.

you can also find a documentation of her life on tik tok via the following link:

https://www.tiktok.com/@clareavery?_t=8poSLxYLWTs&_r=1

https://vt.tiktok.com/ZS2t82G1e/

Thank you for your generosity and kindness. Every donation counts.

With gratitude,

Eleana

Clare’s NDIS Support Worker