Seanna is an incredible 15 year old, but she has lived with more pain than most adults will face in a lifetime. She has spent all her teenage years in hospital beds, ICU units and doctors’ offices. While other teens go to school, study for exams, make plans with friends and plan their futures, she fights to make it through a day without pain.

Everything changed after COVID in 2022. Her body just never recovered. One diagnosis followed another. hEDS, POTS, MCAS and a shopping list of rare abdominal vascular compression syndromes (AVCS). These conditions robbed her of a normal life.

She has had far too many surgeries in her short life time SMA Syndrome (SMAS) , Nutcracker Syndrome (NCS), May Thurner Syndrome (MTS) , Pelvic Congestion Syndrome (PCS). She fought them all and won. But the last one, is the most brutal one of them all - neurogenic Median Arcuate Ligament Syndrome (nMALS).

Seanna cannot eat. Even water hurts. Breathing too deeply hurts. Laughing hurts. She lives on tube feeds and IV hydration through a PICC line. She is exhausted all the time. She cannot go to school. She cannot see her friends. She spends most days in bed.

We are a strong family, but this has pushed us to the edge. We are incredibly blessed to have a private medical aid which pays for all her in hospital care, but the out of pocket costs just never stop. Specialist visits. Medications. Blood tests. Tube feeding supplies. IV supplies. Travel to appointments. Therapy to help her cope with the trauma. It is a mountain that keeps growing.

We reached the point where we needed a real answer. Local doctors are not versed in this type of rare. We first consulted with a specialist who's career is focused on these conditions, Dr Kurtis Kim, who reviewed all her her history and scans who confirmed all her conditions and referred us to Dr Richard Hsu at the Stamford Hospital in the US. He is one of the few surgeons in the world who understands nMALS and has helped more than a thousand patients. He is also the surgeon with the highest success rate for this type of surgery. He reviewed her scans and confirmed what we suspected. She needs his surgery. If it is not done correctly the first time, children like Seanna end up in a cycle of failed operations and more suffering. This already happened to her with two previous surgeries for SMAS before we finally found the one doctor who could help.

All we want is for Seanna to have a chance at a normal life. To eat without pain. To breathe without hurting. To sit in a classroom. To laugh with friends. To have a future.

We are asking for a hand up to make this possible. We just cannot carry the financial load alone anymore. Your support will help us cover her ongoing medical costs and move us closer to the specialist who can potentially change her life once and for all.

Thank you for reading our story. Thank you for caring about a teen who has fought far too hard for far too long and could finally perhaps have the Life 2.0 she so craves.

This explains her condition: https://www.youtube.com/watch?v=OLd8ML_BfRE