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A rare genetic disease has taken 2 of their kids' lives, and now they might lose their youngest

3 min read
A rare genetic disease has taken 2 of their kids' lives, and now they might lose their youngest

2 of their children have already died because of the extremely rare disease, while their third one is currently suffering from it.

Robert and Gloria Alcaraz have lost 2 of their children to Wiskott-Aldrich Syndrome, a rare genetic disorder that causes children to have a very poor immune system, as well as difficulty producing platelets, which are the cells that help control bleeding.

Their bills reach 55,000 pesos a month

On a radio show, Gloria asked for help for their beloved three-year-old, Ivan, who, just like their other children, was diagnosed with the deadly disease.

She shares, “Ako po ay kumakatok sa inyong mga puso na sana po kami ay inyong matulungan sa sitwasyon namin ngayon, lalo na nakikipaglaban yung anak kong si Ivan sa sakit na Wiskott-Aldrich Syndrome, isang kumplikado at nakapa-delikadong sakit na kung may kumplikasyon mang dumapo, maaari po siyang mamatay”

Every two weeks, their family needs trying to figure out how they can save up 25,000 pesos so that Ivan can get IVig, or intravenous immunoglobulin, which helps maintain his failing immune system.

She adds, “”Sa laki ng gastusin na aming kailangan, umaabot po ng P55,000 ang bill namin every month. Sa awa ng Diyos, mayroon pa rin tumutulong pero hindi pa rin sapat kasi hinahabol po namin yung every two weeks.”

They need 9.5 million pesos for the operation that might cure him

While the intravenous immunogloblulin treatments are helping Ivan stay alive, it’s not a permanent measure. The family is hoping that a bone marrow transplant can help cure their son’s condition.

They’re planning to have the transplant in Germany, where the survival rate is higher compared to other countries. Sadly, they need to save up 9.5 million pesos for the operation.

“Dalawang anak ko na po yung nawala. Sana po um-extend po kayo ng inyong tulong sa amin para lang po madugtungan ang buhay niya at bigyan siya ng malaya at mabuting buhay na masaya,” Gloria recounts.

She adds, “Pangarap ko pong gumaling siya. Siya na lang po ang natitirang hope namin, ng aking asawa. Kaya po lumalaban kami para sa kanya.”

Those who wish to donate to help Ivan can do so by calling 414-5431 or 414-1296.

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Source: news.abs-cbn.com, childrenshospital.org

READ: Does my child have Tourette Syndrome?

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Jan Alwyn Batara

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