Stories of Aria

Stories of Aria Stories of Aria is dedicated in spreading awareness to Beckwith-Wiedemann Syndrome.

ARIA IS FINALLY HOME 🏠Thank you for keeping us in your prayers, even if you don't know us personally. Thank you for foll...
06/05/2025

ARIA IS FINALLY HOME 🏠

Thank you for keeping us in your prayers, even if you don't know us personally. Thank you for following Aria's journey to tongue reduction and her continued battle with Beckwith-Wiedemann Syndrome. Your support made things more bearable! ✨

This is Aria two weeks after the surgery. 😊

TONGUE REDUCTION DAY 5Hindi na matutulog nang nakalabas ang dila 🥹
27/04/2025

TONGUE REDUCTION DAY 5

Hindi na matutulog nang nakalabas ang dila 🥹

14/04/2025

Aria is set to undergo diaphragm plication and tongue reduction surgery on April 23.

Earlier, we did a dental appointment to make sure her oral condition is okay so that her healing will be faster. She did xray and 2D Echo then met her cardiologist. We learned that one of her heart valves is quite narrow but the operations are still doable.

Please keep Aria in your prayers especially this Holy Week season. God bless us all! ❤️

APRIL 6 IS BWS AWARENESS DAY 💛A little over a year ago, we started Stories of Aria hoping we could reach parents with a ...
06/04/2025

APRIL 6 IS BWS AWARENESS DAY 💛

A little over a year ago, we started Stories of Aria hoping we could reach parents with a BWS child, and we did!

Although until now, we fear that exposing Aria in social media would hurt her in the future. We fear people might judge us for posting her photos publicly. But then we thought of these people we have helped in small ways by giving them information about , , and which you can't easily find.

We're not sure how far we can do this, but we will until we can. 🙂

DIAPHRAGM NERVE CONDUCTION VELOCITY (NCV)Yesterday, Aria underwent NCV. This test is still part of her clearance for sur...
28/03/2025

DIAPHRAGM NERVE CONDUCTION VELOCITY (NCV)

Yesterday, Aria underwent NCV. This test is still part of her clearance for surgeries.

Based sa diaphragm ultrasound result ni Aria, mas mabagal ang galaw ng left diaphragm kaysa sa right kaya ginawa ang NCV to check thoroughly yung diaphragm. Mahirap at masakit ang proseso lalo para sa bata. Kailangan i-stimulate ang phrenic nerve na kumokontrol sa diaphragm sa pamamagitan ng pagkuryente (mababang boltahe) sa leeg. Ang diaphragm ay ang primary muscle for respiration.

Nobody prepared us for this 🥹I know you will be independent one day, but Nanay and Tatay will always be here to guide an...
18/03/2025

Nobody prepared us for this 🥹

I know you will be independent one day, but Nanay and Tatay will always be here to guide and support you. ❤️

Grabe yung drama para naman nag-debut na. 😆 But I know this speaks to a lot of parents. ☺️

14/03/2025

Practicing Aria's speech through songs. Notice that she still can't close her lips due to her macroglossia. As a result, she sometimes can't produce the P sound, but she's trying. So proud of her. 😊

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