Real Talk

How This Organization Became Warriors for Children with Down Syndrome

by Alexa Villano
October 25, 2022

Modern Parenting talks to Sheila Ann Gimeno of Li’l Brave Hearts, one of the organizations dedicated to addressing kids with Down Syndrome in the Philippines.

Back in 2020, it was reported that 1 out of 800 babies in the Philippines can have Down Syndrome. Although they have challenges growing up, kids with Down Syndrome can still have a happy and normal life.

More companies have been trying their best to include people with special needs in workplaces. This includes those with Down Syndrome. Various organizations have also been helping children and teens with the condition. One of the organizations is Li’L Brave Hearts, which has chapters around the country. Modern Parenting recently talked to Sheila Ann Gimeno, one of the people behind the group, about what still needs to be done on the condition of Down Syndrome.

What is Li’l Brave Hearts?

Sheila gave some quick background about what is the purpose of Li’l Brave Hearts. “LBH, as we are popularly called, is the support of parents of children with Down Syndrome. We are duly registered at SEC as a nonprofit organization to advocate for Filipino children with Down Syndrome.”

“We are focused on DS because our children face a lot of medical issues that need to be addressed to provide better opportunities for them and improve their quality of life.”

Sheila shared what the group has been focused on so far. “We focus on the medical and surgical needs of Filipino children with DS. Particularly to fund open heart surgeries, perforate anus surgeries, and other conditions.”

“We are also focused on finding sponsors to fill the gap of nutritional needs of children needing surgeries and those undergoing chemotherapies for leukemia as well as those undernourished and sick children with DS coming from marginalized families.”

Today, LBH has an office in Sta. Cruz in Manila. It provides shelter for free for families from the provinces who are in need of medical treatment. The group currently has 21 chapters around the country.

Educating about Down Syndrome in the Philippines

Although Down Syndrome has been in the spotlight thanks to the hard work of groups like LBH and other organizations, there is still a stigma that needs to be addressed.

“Taking care and advocating our children’s needs is our biggest contribution in addressing the stigma about having Down Syndrome,” Sheila said. “The world gets to see how their lives matter to us when we fight for their basic rights and needs.”

“Every negative comment encountered is a teaching moment for us to educate about Down Syndrome,” she added. “The world gets to see that through our community, the Li’l Brave Hearts, we are content, proud, and happy having our children.”

One of the biggest issues children with Down Syndrome have experienced is bullying. And for Sheila and LBH, she’s hoping lawmakers can put more teeth into existing laws and policies already available.

“We encourage and support the lawmakers to pass stricter laws that address the issue of bullying as it is deeply rooted in how parents and caregivers teach their children the value of respect for every human life,” she said. “Inclusive education should be implemented. So everyone gets to learn about other conditions. Not just DS but all forms of diagnosis.”

We can still do more for people with Down Snydrome

Although people today now have clearer understanding of what Down Syndrome is, Sheila said more can be done. “Filipinos are generally friendly and more accommodating as we perceive people with Down Syndrome to be ‘malambing‘ and mild mannered. They are even considered as a lucky charm in the family. But there are still people who make fun of them. However, it’s great to know that even outside of our family circle, there are concerned people and advocacy groups that defend them and fight for our children’s rights.”

“In our society, we hope that we would not differentiate ourselves from people with Down Syndrome. They are more like us than different. They may have additional needs and may require additional assistance. But they are capable of giving us unconditional love. And given the chance, they not only thrive but bloom in a welcoming environment. Let us assume competence for them,” Sheila added.

As October is World Down Syndrome Month, Sheila said that the condition is not something to be afraid of.

“Even if our children can have multiple medical issues that need immediate attention, we are working hard in the hopes that our current health care services will recognize these needs. Advocacy groups are some of the voices of our children and new parents can look forward to meeting parents that can help them navigate special needs parenting,” she said.

“The Li’l Brave Hearts have paved the way in accessing funds for free medical services even with complex medical conditions. The Li’l Brave Hearts, as a support group of families, can be reached by parents of newly diagnosed children with Down Syndrome. We can assist them as they start their journey of taking care of a child with Down Syndrome.”