Eric's Deep Brain Stimulation (DBS) Surgery
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I am creating this page since my son, Frederic needs help in funding his surgical procedure called Deep Brain Stimulation (DBS). He has been diagnosed with a rare and genetic form of movement disorder called XDP (X-Linked Dystonia Parkinsonism). This is a movement disorder similar to Parkinson’s disease which causes involuntary muscle movement, drastic weight loss and excruciating pain on the affected muscles. It is a rare disorder that is debilitating, progressive, neurodegenerative and has no cure. To date, he already lost 16 kilos (~32 lbs) after his symptoms started to worsen. The only known treatment besides medication, which loses efficacy over time is DBS surgery. It is a form of brain surgery where electrodes are implanted within certain areas of your brain to treat neurological conditions.
As everyone who knows him well, he is a loving and responsible family man to his wife and son. He used to work in a cruise liner but lost his job when his dystonia progressed. Dystonia took away everything from him - his job, his health, and his ability to support his family. He wasn’t given any employment benefit when it was confirmed through genetic testing that his condition is hereditary. Since he is now unemployed and is the sole breadwinner of the family - he has to worry not just for his medical expenses but their daily sustenance as well.
The DBS surgery, which is his only hope, costs about 2.5 million pesos ($50,000 USD). Since he doesn't have health insurance, he has to pay for everything himself. This is such an astronomical amount for someone who is struggling to make ends meet as it is. We hope that he can get this treatment as soon as he can since his condition is progressive.
This is why I am appealing to your kind hearts to help our family raise the needed funds so he can avail of this treatment. If we can raise this money it will help not just him but his family as well. No contribution is too small and will not go unnoticed. Thank you in advance for your kindness.
As everyone who knows him well, he is a loving and responsible family man to his wife and son. He used to work in a cruise liner but lost his job when his dystonia progressed. Dystonia took away everything from him - his job, his health, and his ability to support his family. He wasn’t given any employment benefit when it was confirmed through genetic testing that his condition is hereditary. Since he is now unemployed and is the sole breadwinner of the family - he has to worry not just for his medical expenses but their daily sustenance as well.
The DBS surgery, which is his only hope, costs about 2.5 million pesos ($50,000 USD). Since he doesn't have health insurance, he has to pay for everything himself. This is such an astronomical amount for someone who is struggling to make ends meet as it is. We hope that he can get this treatment as soon as he can since his condition is progressive.
This is why I am appealing to your kind hearts to help our family raise the needed funds so he can avail of this treatment. If we can raise this money it will help not just him but his family as well. No contribution is too small and will not go unnoticed. Thank you in advance for your kindness.
Organizer
Fe Buck Sansano
Organizer
San Jose, CA
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