UPAlumni.net

From UP alumna Sel Obedicen:

Dear Friends,

I am writing on behalf of Sophie and her parents, Cris and Aicel Delgado. Sophie was born last Sept. 25, 2007, and was diagnosed with Ondine’s disease (Congenital Central Hypoventilation Syndrome – CCHS), a rare neurological disorder where the signal to breathe is never generated by the brain or transmitted to the diaphragm. She is also suffering from Hirchsprung Syndrome, a malfunction of the intestine causing difficulty in defecation. The Ondine’s Disease or CCHS is a lifetime disease, but through continued treatment and proper care, children who suffer from this disease live a normal and active life. The only difference is that they have to live with a hole in their neck where the ventilator can be connected when they are asleep. Internationally, a total of 800 cases of children with Ondine’s disease have been documented. A great number of them are in their 20’s and 30’s.

There is still no known cure for Ondine’s disease. Baby Sophie is currently in Lourdes Hospital, and her parents are put into deeper and deeper debt as the days pass. Much as they want to transfer her to a government hospital, the possibility is not good. To date, there are only four documented cases in the Philippines of babies with Ondine’s disease, Baby Sophie being the latest. The first case in the University of Santos Tomas (UST) Hospital died. The second case was diagnosed and treated in the same Hospital (Our Lady of Lourdes) where Sophie is in now, and is now three years old. The third is a three-month old baby now confined in Asian Medical Hospital in Alabang, Muntinlupa. Her parents decided to have her stay in Lourdes Hospital so that Baby Sophie can receive the kind of treatment from specialists who are familiar with her case.

In the short run, her parents need to raise money to pay Baby Sophie’s medical bills. There will be 2 fund raising concerts this January at the Conspiracy Cafe in QC, where Noel Cabangon and Gary Granada will perform. If you want to buy tickets to the concert (P300), please contact me.

In the long run, her parents would need to bring Baby Sophie home. However, they still need to raise funds to buy a ventilator, which will approximately cost P1million. If you know of someone or an organization who could serve as a donor for them to have the ventilator, please contact Aicel or Cris at 09282644569

Most importantly, Baby Sophie needs your prayers. If it is not too much to ask, please pray that she be given a longer lease on life as you pray everyday.

Baby Sophie has a website, which you can view for further details. http://helpforsophie.multiply.com/.

I’ve met Cris and Aicel personally and they’re very good people. They work in DLS-CSB, where my husband also works. Let’s try to give Baby Sophie help in any way we can.

Thanks!

Sel Obedicen

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