Orphan Disorders & Rare Diseases in the Philippines

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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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Stolen Laptops, Car Robberies in Ortigas Center, The Fort

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Update

Ryan Soriano Does Not Return Stolen Macbook Pro, Betrays Trust

Marc Macalua saw someone selling his stolen Macbook Pro on PhilMUG and various for-sale sites. After pointing this out to the poster, user djwoblely, who was identified as Ryan Soriano, a meeting to retrieve the laptop was arranged. Unfortunately, Mr. Soriano was a no-show for the March 24 meeting.

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News on losing a laptop or a gadget does not really hit me as hard as when a friend is the victim. In just a span of a week, three of my friends were victimized. Let’s hear their stories.

1. Liz post on Be Paranoid: Car Robberies at The Podium and The Fort where three laptops were stolen from a car trunk on Friday the 13th.

Last night, Marco lost his new Macbook Pro, which he got not more than a month ago for P100,000. He left it in the car trunk of a friend, which was parked by The Podium in Ortigas. They left the parking lot at 9pm for dinner and came back 1am which is when they discovered that the trunk was broken in and three laptops were stolen, including his friend’s Macbook Air (this sells for P80,000 each) and a Dell laptop .

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How I Survived The Amazing Race at Island Cove

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Have you ever dreamt of being a winner, racing on to the finish line? One of my favorite shows is the Amazing Race. Whenever I see the contestants running from one stop to the next, I feel like I am hanging on the edge of my seat . A wave of adrenalin hits me as if I am right there with them. Even if I know I will never be qualified to join , my mind conjures up scenarios that I am actually rushing to the next stop. I want to be there. Yes, it is my dream to win in a race.

island cove
Though Amazing Race is a far-fetched dream, it does not stop me from taking up physical challenges. The Detour: The Island Cove Adventure sponsored by Yehey and Island Cove was a perfect opportunity. Can I really make it?

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Parenting, Blogging and Our Love Story in Net 25 MOMents

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I groaned. Not another show. I felt there are many wonderful moms out there who are so much better than me but Net 25 MOMents was persistent. They said the show is for mothers and kids that feature the different bonding moments, child-rearing styles and the many facets of motherhood. I felt like it has been ages since I have actually been a hands-on mom. I have long since enjoyed my independence from child-rearing since the girls turned 20. What could I possibly offer to the MOMents feature?

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Francis Magalona Succumbs to Cancer

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Photo Credits to Francis Magalona’s Multiply Site

Francis Magalona Succumbs to Cancer at the age of 44 at the Medical City Hospital after a 7 month battle with AML (Acute Myelogenous Leukemia with Mixed Lineage) or MLL. Francis died due to multiple organ failure ““secondary to severe sepsis and secondary to pneumonia,” according to a doctor who was not authorized to talk to media.

Rest in Peace, Francis. I somehow know the battle with leukemia as I witnessed my brother’s struggle with leukemia for three years.

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The Grief of The Invisible Class

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A paragraph in Manolo ‘s entry on The Long View Insecurity and The Invisible Class caught my eye:

And meanwhile, there continue the biting criticisms. Blogger Caffeinesparks puts it this way, reacting to the outpouring of sympathy and shock over the death of Amiel Alcantara, the child accidentally run over in Ateneo de Manila: ““in the shanties along Pasig river, a kid playing falls into the water—drowned. Dead; a street urchin playing on the island along the road, runs after a kitten, gets run over—dead; babies die because their mothers live too far from health care centers or can only afford a manghihilot; 10 mothers dead a day—due to childbirth.” These are the grim and unnoticed statistics—so plentiful as to be unfelt—of what she calls the Invisible Class.

Why is it a biting criticism? If the blogger had access to the mortality statistics, why not write about it instead of criticizing the sympathy showered over Amiel Alcantara’s death? And perhaps, take it from there?

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Pepe Alcantara, Amiel Alcantara’s Dad Delivers 4 Messages

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My husband refused to listen to me the night I first learned of Amiel Alcantara’s death. As I narrated the sordid details on how Amiel Alcantara died, Butch clamped his ears, “Stop it, I don’t want to hear anymore. It is just too much” All he knows is that Amiel got ran over by a van inside the Ateneo campus. He couldn’t take in the violent nature of Amiel’s death. (Edit March 8: My husband wrote A Grief Beyond Words) .So, when I visited the wake of Amiel Alcantara on February 25, I was all alone. No worries, I was there to offer comfort that a grief support group such as The Compassionate Friends is around if they needed it one day. Good thing Cathy was around too. I kept staring at Pepe Alcantara. He looked familiar to me but I couldn’t place his face. That night, I told Butch that I met the father, Pepe Alcantara. The name rang a bell to Butch but it was only the following day that we got confirmation in the papers that he is the same Pepe Alcantara he knew back then in his UP student days. Pepe was the UP Student Council President in the early 80’s with Lean Alejandro as his vice. Pepe and Butch belonged to the same student organization in the UP student days. Surely now, Butch will want to see Pepe.

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