VoicesOfHumans Regalo


Having a child with Down Syndrome has no life status. It doesn’t choose between rich and poor. I saw from someone in the hospital who is also taking an ultrasound. She is looking for names in the Bible. The word Z-E-H-B caught my attention, which means “gift of God”. True enough, when my child Zebh came, he is a gift for us. Whatever your question is, your answer is, I can only give one thing. Mady is a gift. We want to let the world know that we are celebrating our children, that’s why we are here. GIFT We are a support group of parents who have children with Down syndrome. As parents who have children with Down syndrome and I, with medical background as a Physical Therapist, I can see the challenges to raise children with special needs. Li’l [Little] Brave Hearts aims to offer support to children with Down syndrome, and those with sickness, and their parents who are economically struggling. When I first saw him, he has a lot of supports in his body and he looks very small. That breaks our hearts as parents. I was afraid. I was doubting myself if I can do it. To raise a normal child is already a challenge as a mother, so how much more with this kind of situation? And even with a heart problem. The Doctor advised us that Zehb had to undergo an operation urgently. Zehb’s father works in a factory. He has been taking medicines in three months now. We prioritise our budget for the medicines. For the rest of our expenses, we just need to save a lot. Sometimes, people will say, maybe they don’t intend to hurt Zehb, as children with his condition tend to grow very slow. I always need to carry him. So, some asked what will I do if Zehb can’t still walk until he’s 10 years old. It’s painful when they think that Zehb is a problem. But for us, he will never be. I started with Li’l Brave Hearts when I was contacted by Shiela. She saw my posts about T-shirt design printing. She was thinking to start a fundraising activity, wherein parents who have children with Down syndrome can re-sell items. Li’l Brave Hearts started from my son, Carl Angelo. Every week, we feature a child who needs assistance. There are parents who can’t afford to provide good quality of milk for their children. We have another project wherein mothers are making products like cosmetics and dish washing liquids. We work together with these parents, so we can have more items for fundraising activities. Come in! After my caesarean section/delivery, I was told that my baby has a Down Syndrome. That time, I knew that my daughter has a problem. That time, there was a 50-50 chance that only one of us could survive. Fortunately, the two of us survived but my baby ended up having Down syndrome. I knew it will be hard, but I was just thankful that both of us could make it. This is the room where Mady spends most of her time with her nephew, Arki. They play here the whole afternoon. She was just four months old in my womb, when her father got sick and was confined in the hospital. I was exposed in the hospital and it was one of the reasons why Mady got a congenital cataract. When Mady’s eyes were removed, she lost her confidence. She prerred to stay in the room where she finds her comfort zone. We also tried not to expose her outside if it’s too noisy. When she got her prosthetic, she started to change. Before, she could not even look at the mirror. Since I gave birth to Mady, I already convinced myself that I have to be hands-on. I am making all these products when I feel depressed. Every time I mix every ingredient for these items, I have to think that I need t to sell every item for my child, for my husband. We need this, we need to live. If Mady did not come in our lives, I might not be here anymore due to my sickness. That maybe the reason, that Mady was given to us, to show that we need to continue fighting, continue living. Life is valuable. At some point, we have a certain disability. There are things that we can’t do. Our children can show us, they remind us that any kind disability can never stop someone to have a great life. Not only to be accepted, we need to embrace and include them in our daily lives. GIFT

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