Hope for Jed

Dear family and friends,

The husband of my best friend and my own good friend, Joseph Edward A. Parrocho, was recently diagnosed with XDP (X-Linked Dystonia Parkinsonism) or X-Linked Dystonia of Panay.

It is a very rare form of movement disorder in which your muscles constantly and involuntarily contract, causing repetitive or twisting movements with no relief. It starts off as slow movements, lack of facial expressions, inability to maintain balance and tremors and progresses to such a point when simply eating and sleeping is next to impossible.

It is a progressive, neurodegenerative disorder linked to Parkinsons. Little is known and there is no cure at the moment.

Treatments are available such as oral medications, physical therapy. The most effective and recommended medication is the Deep Brain Stimulation (DBS), it is sometimes called a pacemaker of the brain and delivers electrical stimulation in order to control or reduce neurologic symptoms.

Joseph is considered a good candidate for it as his condition has advanced so fast that his feeding is now done via NGT feeding. He needs this immediately. However, the treatment will cost him more or less 2 – 2.5 million Philippine pesos or GBP29,000-36,000.00.

I am knocking on your generous and kind hearts for help. Joseph is a father of 2 beautiful young boys aged 6 months and 4 years. I hope to give him a fighting chance to see his boys grow up. Any amount you can spare would be greatly appreciated.

Thank you so much for your kindness.