Standing Strong with Shahni - A Journey with hEDS and Complex Conditions

For years, Shahni has faced debilitating symptoms, from severe pain and joint issues that make walking a struggle, to blood flow problems and a rapidly fluctuating heart rate. Constant pain and nausea also make it difficult for her to eat.

After 13 years of searching for answers, our daughter Shahni (19 yrs old) FINALLY has a diagnosis:

- Hypermobile Ehlers-Danlos Syndrome (hEDS)

- Superior Mesenteric Artery syndrome (SMAS) a specific type of Abdominal Vascular Compression

- Severe Nutcracker Syndrome with collaterals

- Postural Orthostatic Tachycardia Syndrome (POTS)

A number of rare complex interconnected conditions.

This diagnosis is the first step toward a treatment plan, but requires life-changing surgery not available in New Zealand. We are now in contact with specialists in Germany and Australia to determine the best path forward.

Before her health declined, Shahni was an active swimmer and dancer, but today finds comfort in her art. Unfortunately her conditions have forced her to abandon her digital art studies, but her art continues to be her creative outlet and escape.

This fundraiser is to help us get Shahni the specialized treatment she desperately needs. Your support will help us get her closer to a life with less pain and more independence.