Fight against XDP Dystonia Parkinsonism

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"X-linked dystonia parkinsonism (XDP), also known as Lubag Syndrome or X-linked Dystonia of Panay, is a rare x-linked progressive movement disorder with high penetrance found almost exclusively in males from the Panay, Philippines.[1] It is characterized by dystonic movements first typically occurring in the 3rd and 4th decade of life. The dystonic movements often either coexist or develop into parkinsonism within 10 years of disease onset."

[SOURCE: https://en.wikipedia.org/wiki/X-linked_dystonia_parkinsonism]


Jonathan Legion 39, Male, is suffering from XDP (X-linked Dystonia parkinsonism) for about 2 years already. As time passes by his condition is getting worse. During the early stage of this condition he can still do normal activities like walking, eating alone,roaming around the house, doing some household chores with a minimal tremor. As time goes by, the tremor is getting worse that he needed to have botox every 3 mos and oral medication to help him stable his movements and to ease the pain. Last month, July 2019 doctor advice them to stop the meds for it is affecting his liver already and it is not helping anymore with the pain. Pain is getting worse, that he couldn't get up without the help of his family. His wife Jackie the provider of the family recently quit her job to give her full attention. Reason for this is to raise funds for his upcoming procedure.

Pallidotomy, a procedure where in a certain part of our brain will be heated to destroy a certain brain cell. This help to improve the movement of the patient, and ease the tremor. This procedure was suggested by the doctor to be conducted as soon as the test for Jonathan is cleared and ready for the procedure.

We Will be needing a Php. 150,000 for this procedure. And hopefully this can give a new start for Jonathan.



Thank you very much!


Organizer

  • Jacqueline Jamela
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  • Campaign Owner

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Jacqueline Jamela
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raised of ₱150,000.00 goal
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No more donations are being accepted at this time. Please contact the campaign owner if you would like to discuss further funding opportunities