Support Orsi to get HSCT

Many of those who know my wife, Orsi, know that she’s suffering from Multiple Sclerosis and has been for many years. In fact, she was diagnosed at only 18 years of age. Multiple Sclerosis (MS) is a complex and challenging neurological disorder that affects millions worldwide. It occurs when the immune system mistakenly attacks the protective covering of nerve fibres, causing communication issues between the brain and the rest of the body. This can lead to a wide range of symptoms, including fatigue, numbness, difficulty walking, muscle weakness, and even cognitive impairment. The unpredictability of MS and the diversity of its symptoms make it a disorder that is very challenging, and it is impacting not only the physical but also the emotional well-being of those diagnosed.

Despite being diagnosed at a very young age, Orsi confronted the challenges with incredible resilience and determination. Her initial diagnosis was relapsing-remitting MS, a form characterized by episodes of symptom flare-ups followed by periods of remission. With the help of steroid infusions, Orsi successfully managed to achieve remission for several years. Unfortunately, a few years ago, the disease evolved into its secondary progressive stage. This more advanced phase signifies a gradual decline in her condition, with symptoms becoming more severe and constant. Unfortunately, Orsi faces the sad reality of a future where she may become permanently bound to a wheelchair or, worse yet, bedridden. The worst of all is the unknown, that not Orsi, nor the doctors are able to tell what the next progression of the disease will be and how long she has left before her disability takes turn for the worse.

The reason why we created this Go Fund Me campaign is that she recently found out about a treatment which offers a glimmer of hope for her, for us.

The procedure is called Hematopoietic Stem Cell Transplantation (HSCT). Although the treatment is available in Australia, unfortunately, she does not qualify according to their entry requirements. This amazing procedure is only available and accessible for her overseas.

The cut off for any patients to receive this treatment is a maximum of 6.5 level of disability, which is what Orsi classifies at right now.

Therefore, this offers a once-in-a-lifetime chance for Orsi to have this treatment done. Although HSCT doesn’t provide a complete cure for MS, as it can’t “fix” previously occurred nerve damage, but it holds great potentials to halt the disease's advance and offer Orsi a much brighter outlook of her future.

The HSCT procedure is a complex and serious undertaking. It involves harvesting stem cells from Orsi's bone marrow before subjecting her body to a rigorous regimen of chemotherapy. This intensive treatment is aimed at destroying her malfunctioning immune system, effectively resetting it. The harvested stem cells are then reinfused into her body, allowing for the development of a new, healthier immune system. While HSCT comes with significant risks and demands an immense amount of physical and emotional strength, it has shown remarkable promise in halting the progression of MS. However, this hope comes with a significant financial burden. The hospital cost of the HSCT procedure amounts to US$50,000, an overwhelming expense that we are struggling to shoulder alone. Her disability prevents me from working full time, as I become her full-time caregiver, leaving us in a challenging financial situation.

Orsi has never asked for any help as most of you who know her would know, and it is even hard for us to ask for help now. But right now, we would very much appreciate if you could support her / us in any ways possible. Orsi will keep everyone who would like to know more about her journey updated in a closed Facebook group. Thank you all so much for reading and for considering helping Orsi.