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Dear Friends, Family, and Compassionate Donors,
We are reaching out with heavy hearts and hopeful spirits to share the story of our beloved son, Sebastian, who has been courageously battling a rare and debilitating condition known as Susac Syndrome since 2021. This autoimmune disease attacks the small blood vessels in the brain, inner ear, and retina, leading to a range of severe symptoms that have drastically altered his life.
About Susac Syndrome
Susac Syndrome is a rare and complex autoimmune disease that targets the endothelial cells lining the smallest blood vessels in the brain, retina, and inner ear. This relentless condition causes:
- Brain: Encephalopathy, leading to headaches, confusion, memory loss, cognitive dysfunction, and strokes.
- Retina: Branch retinal artery occlusions, resulting in blurred vision, scotomas (blind spots), and potential vision loss.
- Inner Ear: Sensorineural hearing loss, tinnitus (ringing in the ears), and balance issues.
Sebastian’s Journey
In 2021, Sebastian’s life was turned upside down when he began experiencing the devastating effects of Susac Syndrome. He has endured three strokes, which have severely impacted his ability to walk independently and maintain his balance. The hearing loss has further compounded his struggles, making daily life an immense challenge.
Sebastian's treatment journey has been arduous and international. He initially received care in Poland, at the hospital in Siedlce, various neurological hospitals in Warsaw, and the Military Medical Institute. Despite these efforts, the severity of his condition necessitated specialized treatment in the United States. Now, he is under the expert care of NY Presbyterian-Columbia University in Manhattan.
Sebastian’s treatment regimen includes:
- IVIG (Intravenous Immunoglobulin): Given twice a month to boost his immune system and reduce inflammation. Unfortunately, the availability of IVIG is inconsistent, often requiring travel to New York to obtain this crucial medication.
- Cytoxan & Rituximab: Administered on an alternating schedule every six months. Rituximab targets and depletes the B cells responsible for the autoimmune attack then Cytoxan suppresses the immune system by preventing new B cells from being created by the body.
Our Family’s Commitment
As his parents, we work full-time to support Sebastian both financially and physically. We assist him with daily activities, from walking to basic self-care, as he cannot manage these on his own. Despite the immense challenges, our love and dedication to our son remain unwavering.
Sebastian is also a devoted father to his young son, Oliver. The bond they share is incredibly special, and Sebastian’s greatest wish is to regain his health and independence to be the active, present father Oliver needs.
Why We Need Your Help
The costs associated with Sebastian’s treatment are overwhelming. The medications alone, particularly the elusive IVIG, are extraordinarily expensive, often exceeding tens of thousands of dollars. The travel expenses to secure these treatments add to the financial strain.
Your generous contributions will directly support:
- Continued access to vital medications like IVIG and Rituximab.
- Travel expenses for necessary treatments.
- Daily care and rehabilitation efforts to improve Sebastian’s mobility and quality of life.
Our Hope and Optimism
While Susac Syndrome is relentless, we remain hopeful. With your support, we believe Sebastian can continue to receive the life-saving treatments he needs, regain his strength, and eventually walk on his own again. Our goal is for Sebastian to return to his role as a loving, active father and regain his independence.
We humbly ask for your help in this critical time. Every donation, no matter the size, brings us one step closer to giving Sebastian the fighting chance he deserves. Thank you for your kindness, generosity, and support.
With heartfelt gratitude,
Andrzej, Jagoda and Sebastian Ganko
Organizer and beneficiary
Andrzej Ganko
Beneficiary