Hi Everyone I'm back after how many months na nag uninstall ako ng app because of my son's condition.
He's Ryu, my first baby, he's 6 months old, and diagnosed with a rare genetic disease called Spinal Muscular Atrophy Type 1.
Unfortunately there's no treatment here in the Philippines, and the treatment called ZOLGENSMA, that he needs in order to survive(not cure) is worth $2.1 million dollars, mahigit 100 million pesos mga inay, and he may not reach 2 years of age without the treatment. He's now trach (butas sa leeg para doon huminga with the help of Ventilator) and g tube (butas sa tyan para dun na kumain).
I'm just so proud of him, how brave and strong and always smiling he is despite of everything he went through, and I'm so heart broken and so sorry for him at the same time, because he don't deserve this, no child deserves this.
I hope Ryu's story and journey will inspire others. And sa mga parents na may anak na may special needs, I salute to all of you!
#firstbaby #1stimemom #baby #fightforRyu #cureSMA