Hope Floats: A Family’s Journey for Neurological Breakthroughs
Romina Bianchi, a mother from Flores, Buenos Aires, is on a determined quest to secure a potentially life-changing treatment for her 10-year-old son, Santiago, affectionately known as Tati. Tati lives with cerebral palsy and refractory epilepsy, conditions that have presented significant challenges since he was just three months old. His story highlights a growing trend: families seeking experimental treatments abroad when local options are limited.
The Promise of Experimental Therapies
Tati’s case centers around a potential treatment available in Mexico, estimated to cost $35,000, plus travel and living expenses. This treatment aims to improve his neurological function. The possibility was brought to light by the Mexican film “Los dos hemisferios de Lucca,” which details a similar journey for another child with disabilities. This underscores a rising awareness of innovative, though often costly, medical interventions.
Understanding the Challenges: Refractory Epilepsy and Cerebral Palsy
Refractory epilepsy, as experienced by Tati, is a severe form of the condition that doesn’t respond to conventional medications. This can lead to persistent seizures and impact neurological development. Cerebral palsy affects motor control, posture, and communication, with each child experiencing it uniquely. Tati’s condition is further linked to a genetic disorder known as “PIGA-CDG” or “deficiency of the PIGA Gene,” impacting organ development and contributing to his seizures.
A Tricky Start and the Role of Cannabis Oil
Romina recounts a challenging birth, involving the use of forceps, and early signs of distress in Tati. After numerous hospital visits and diagnoses, the family explored alternative therapies, including cannabis oil, when Tati was two years old. This led to significant improvements, including reduced seizure frequency, improved interaction, and the ability to eat solid foods. This highlights the growing consideration of complementary and alternative medicine in managing complex neurological conditions.
Finding Strength in Community and Sport
Despite ongoing challenges, Tati participates in activities like swimming, where he has already achieved a medal. His mother dreams of seeing him compete in the Paralympic Games. The family receives support through a disability pension and programs like Incluir Salud, which are helping to provide essential equipment like a specialized wheelchair. This demonstrates the importance of community support and accessible sports programs for children with disabilities.
The Financial Burden of Hope
The cost of the Mexican treatment presents a significant hurdle. Romina and her family are actively fundraising through donations, raffles, and community initiatives. This situation is unfortunately common, as families often face substantial out-of-pocket expenses when pursuing specialized medical care.
Navigating a Complex Healthcare Landscape
Romina’s journey similarly reflects a broader struggle to navigate a complex healthcare system. Her experiences, including past experiences with violence during pregnancy and the loss of her father during the pandemic, add layers of complexity to her advocacy for Tati’s well-being.
FAQ
- What is refractory epilepsy? It’s a severe form of epilepsy that doesn’t respond to typical treatments.
- What is cerebral palsy? A condition affecting movement, posture, and communication.
- What is the PIGA-CDG gene deficiency? A genetic disorder impacting organ development and potentially causing epilepsy.
- How much does the treatment in Mexico cost? Approximately $35,000, plus travel and accommodation.
Pro Tip: Explore local disability support organizations and government programs for financial assistance and resources.
If you’d like to learn more about supporting families facing similar challenges, please consider donating to organizations dedicated to pediatric neurological disorders or sharing this story to raise awareness.
