Help Niño survive DandyWalker & Hepatoblastoma

Hi everyone, we’re knocking on your good heart to please help us continue fighting for our miracle baby's battle.

Our little warrior is Niño Thaddeus. He was born with the dandy-walker syndrome with non-communicating hydrocephalus and arachnoid cyst. ( Dandy walker syndrome is a congenital brain malformation involving the cerebellum (an area of the back of the brain that coordinates movements) and the fluid-filled spaces around it) left him with significant developmental delay.

He is our newest stress dissolver. With his smile, you will never know what he has been through. He just turned 2 last March 25th and is our absolute pride and joy. Everyone will agree that your life changes beyond all when you have a child. In our case, our lives took a direction we could never have foreseen.

I was 6months pregnant when we found out about his condition, all I just can remember is that I’m crying, and crying and crying. What will happen to him?

The specialist told us everything he could but the phrase that stuck with me the most was that in his opinion we should consider giving up our baby because it will not be an easy journey. We’re also advised that most cases like this do not survive beyond their first year and that many do not live beyond the first month.

Shocked, scared, sick, heartbroken…..none of these can come even close to explaining the emotion that swept our world away that day. Later that day when we got home we googled and read all the articles related to our baby’s situation. Even if the baby did have hydrocephalus, we read about shunts and therapies and were sure everything would be ok. The baby might have some problems but all would be fine and we’d get through it.

All I wanted is my son, my only son to be born like other kids. No one has the right to tell someone else to give up – or continue – a pregnancy. I will be strong and fight with my baby.

July 4, 2020, with the help of our family, friends, and good people our little warrior had a successful shunt surgery. It was an emergency surgery because the cyst on his head is getting bigger. It was a really hard process, especially this time of the pandemic. We need to move him to another hospital because the staff that was supposed to participate in his surgery has contracted COVID.

But before moving him, while processing all the requirements for our baby to undergo surgery, we were advised that he has pneumonia so we’re giving him medication for 2-3 weeks because he can’t be in the surgery if it’s not all clear. But when we finally moved him to another hospital, we were shocked that our baby don’t really have pneumonia and it was just a technical error. We are so mad because he is supposed to have the surgery earlier but was delayed multiple times just because of incorrect test results. We didn’t do any action about it because our main concern is our baby and we’re also glad that we moved him to a better hospital and to the best doctor we ever met.

After his successful surgery, he needs to continue his therapy for his developmental delay and continue his vitamins to strengthen his immunity. His therapy is heavy for us since my husband earns a meager salary. He works as a delivery man and as an essential worker, while I stayed at home to take care of my two young daughters and especially Niño.

Being a parent is hard work. Being the parent of a child with special needs is so much harder. But having to fight, march, campaign, and endlessly email people, NGOs, and health providers, just to get help for your child makes it all far harder than it needs to be. 

Just this month, we brought him back to his Doctor because his cold keeps coming back then the doctor noticed something on his tummy. We were advised to bring our baby to ER to check him thoroughly. Then they saw some mass on our baby's liver which brought back again all the memories from the start. We thought after his surgery, our fight will be easier, but unfortunately, it's not. Some laboratory/exams that his Doctor is requesting are not favorable with our financial state right now. We've already asked everyone we can go to for help, but it's still not enough for his expenses. It really breaks our hearts as parents, not providing him with what he needs that makes him better. Our poor baby has been through a lot. But we will never lose hope and continue fighting for him to feel better soon and everything will be ok. We will always fight for him.

That's why we're here again to ask from your good heart for some help for our baby Niño. Ct scan, blood test, and other laboratory find out the multiple small masses on his liver are cancerous (Hepatoblastoma) and must be treated immediately by chemotherapy. I’m raising funds for our baby so he can grow healthy and continue surviving his situation.

Your contributions will really help us so much, regardless of how much it is.

And again, we would like to thank all our family members, friends, NGOs, and everyone who helped and continue helping us from the start till these days. You all are a big part of our baby's life. You help him to survive and help us fight with him. We might not be in the position right now to pay it forward financially but we will surely never forget about you and we will continue spreading kindness in other ways. You will always be in our prayers. The time will come, and we will pay it forward like what you did to us.

Our family will be forever grateful for your donations, thank you so much, everyone.

God bless you always.