When a child is diagnosed with a rare disease, parents have to navigate more than just medical therapies and hospital visits, but also the deep emotional toll. We explore the mental health impact experienced by parents in the rare disease community, and listen to this month’s impact story on the role of parental support in helping families feel less alone.

Image Credit: Malaysian Rare Disorders Society (Persatuan Penyakit Jarang Jumpa Malaysia) Facebook

When a child is diagnosed with a rare disease, parents have to navigate more than just medical therapies and hospital visits, but also the deep emotional toll. We explore the mental health impact experienced by parents in the rare disease community, and listen to this month’s impact story on the role of parental support in helping families feel less alone. Image Credit: Malaysian Rare Disorders Society (Persatuan Penyakit Jarang Jumpa Malaysia) Facebook

Wander and be enlightened by the endlessly fascinating inner universe that is the human body. We speak with experts, Nobel laureates, cancer survivors and healthcare workers who share their unique perspectives on wellness and living and the latest medical research.

Health & Living

Mind Matters: Helping Parents Feel Less Alone (Part 1)

Bedtime is often when battles are waged at home. Why is sleep such a point of contention between parents and children? How much sleep do kids really need, and how can everyone in the family have healthier sleep habits? We speak to Dr Rajini Sarvananthan, Consultant Developmental Paediatrician.



Image credit: Shutterstock

Bedtime is often when battles are waged at home. Why is sleep such a point of contention between parents and children? How much sleep do kids really need, and how can everyone in the family have healthier sleep habits? We speak to Dr Rajini Sarvananthan, Consultant Developmental Paediatrician.Image credit: Shutterstock

Do Kids Today Get Enough Sleep?

Every mother dreams of giving her child every opportunity in the world, starting with the inviolable security of a citizenship. This is more than just a birth document or a passport - it is an undeniable stamp of assurance that her child has a land to call home. However, Malaysia is one of 25 countries globally with gender discriminatory citizenship laws - here, women are denied the same right as men to pass citizenship to their children. On this episode of Because Feelings Matter, we speak to Patricia Low, Research & Policy Coordinator and an impacted mother from Family Frontiers, on the long fight for her child’s citizenship, and how Family Frontiers provides mental health support for binational families affected by Malaysia’s citizenship laws.

Every mother dreams of giving her child every opportunity in the world, starting with the inviolable security of a citizenship. This is more than just a birth document or a passport - it is an undeniable stamp of assurance that her child has a land to call home. However, Malaysia is one of 25 countries globally with gender discriminatory citizenship laws - here, women are denied the same right as men to pass citizenship to their children. On this episode of <a target="_blank" rel="noopener noreferrer nofollow" href="https://www.bfm.my/because-feelings-matter">Because Feelings Matter</a>, we speak to Patricia Low, Research &amp; Policy Coordinator and an impacted mother from <a target="_blank" rel="noopener noreferrer nofollow" href="https://familyfrontiers.org/">Family Frontiers</a>, on the long fight for her child’s citizenship, and how Family Frontiers provides mental health support for binational families affected by Malaysia’s citizenship laws.

Because Feelings Matter #51: The Fight For My Children To Be Malaysian

Six-year-old Dhia Amanda was born with GNAO1 neurodevelopmental disorder, an extremely rare genetic condition that causes severe dystonia – uncontrollable twisting, stiffening and violent spasms brought on by electrical storms in the brain. Thanks to the fundraising efforts of Suriana Welfare Society and Free Malaysia Today, Amanda was able to undergo deep brain stimulation (DBS) surgery, which provides hope for relief for her symptoms. On Beyond The Diagnosis, we catch up with Amanda’s father Saifol Sujak Sulaiman, to find out how she’s doing now. We also speak to Rachel Ho from Suriana Welfare Society about Amanda’s fundraising journey, and to consultant paediatric neurologist Dr Lim Wei Kang about how rare diseases like GNAO1 develop.


Beyond The Diagnosis is a series that goes beyond a medical diagnosis to explore people’s personal experiences, their challenges, as well as the impact of their health condition on their loved ones. Suriana Welfare Society is supporting families of children with rare diseases through advocacy and fundraising.

Six-year-old Dhia Amanda was born with GNAO1 neurodevelopmental disorder, an extremely rare genetic condition that causes severe dystonia – uncontrollable twisting, stiffening and violent spasms brought on by electrical storms in the brain. Thanks to the fundraising efforts of Suriana Welfare Society and Free Malaysia Today, Amanda was able to undergo deep brain stimulation (DBS) surgery, which provides hope for relief for her symptoms. On <a target="_blank" rel="noopener noreferrer nofollow" href="https://www.bfm.my/content/tags/beyondthediagnosis">Beyond The Diagnosis</a>, we catch up with Amanda’s father Saifol Sujak Sulaiman, to find out how she’s doing now. We also speak to Rachel Ho from Suriana Welfare Society about Amanda’s fundraising journey, and to consultant paediatric neurologist Dr Lim Wei Kang about how rare diseases like GNAO1 develop. <a target="_blank" rel="noopener noreferrer nofollow" href="https://www.bfm.my/content/tags/beyondthediagnosis">Beyond The Diagnosis</a> is a series that goes beyond a medical diagnosis to explore people’s personal experiences, their challenges, as well as the impact of their health condition on their loved ones. <a target="_blank" rel="noopener noreferrer nofollow" href="https://www.suriana.org/">Suriana Welfare Society</a> is supporting families of children with rare diseases through advocacy and fundraising.

Mind Matters: Helping Parents Feel Less Alone (Part 1)

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