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Orphan Disorders & Rare Diseases in the Philippines

A parent’s love knows no boundaries. Remember the movie, Lorenzo’s Oil? Failing to find a doctor capable of treating their young son Lorenzo’s rare disease, adrenoleukodystrophy (ALD), Augusto and Michaela Odone sought their own cure. Lorenzo died on May 30, 2008 at the age of 30 though but lived 16 more years when they found the cure.

I had the pleasure of meeting another loving mother, Vilma Dee (read her story) as one of our members in The Compassionate Friends Grief Support Group. No, she did not find a cure for her daughter’s very rare disease called Wilson Disease, diagnosed at the late stage of the disease. Wilson disease is a genetic disorder that prevents the body from getting rid of extra copper. Through sheer research, she discovered contact persons abroad that provided medicines for her daughter. Her daughter didn’t live long but Vilma continues to save lives by being the contact person for Wilson Disease in the Philippines. Mary Graper, president of Wilson Disease Association (WDA), praises Vilma, ““I never imagined she would be doing as much as she has been doing for the last seven years (since her daughter died) . . . . Despite her great loss, Vilma is determined to help others in the Philippines so that they would not suffer the same loss as she had.”

Good thing her heart is big enough to accommodate all of them.

Another mother with a big heart is Cynthia Magdaraog, President of the Philippine Society for Orphan Disorders (PSOD). She had no idea back then that her 10 year old Dickoy had a rare disease called Pompe Disease. She was only told that her son had muscular dystrophy. Cynthia went as far as the USA for consultation and got the correct diagnosis, Pompe Disease, a disorder which causes the deterioration of the body’s muscular system. She was told that her son won’t live long but today, at 28, Dickoy goes about his day on a wheelchair, and aided by a breathing machine. He even managed to get a degree in Industrial Design as well as lead a productive life by forming and running a business of his own.

Cynthia Magdaraog, PSOD President and a parent of Dickoy, who at the early age was diagnosed with Pompe disease

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