Today we celebrate our nation's 46th birthday and as with each national day, there is a new song for the celebrations. The official song this year is "In A Heartbeat".
This song cannot bring on the flood gates like my all time favourite "Home" but the music video is well produced and tells the story of Singapore from the perspective of a family, mainly the Mother and Son. As their life journey progresses, so does our nation. I feel this would be an opportune time for me to share with you the tough journeys and needs of two little Singaporeans Chloe & Aleks who both suffer from rare disorders. Chloe from Pompe Disease and Aleks from Gaucher Disorder, both of which are very rare genetic disorders and require a huge sum of money annually for their treatment. As these conditions are extremely rare, no organisation nor government body provides funding of any kind in Singapore. And it is with more awareness and support that we can hopefully put Singapore on the map for government funding of Lysosomal Storage Disorders (LSD) and Rare Disorders Society Singapore (RDSS) patients.
What is LSD (Lysosomal Storage Disorder)?
All lysosomal storage disorders (LSDs) have a similar origin: a genetic (inherited) problem that causes a deficiency or malfunction of a particular enzyme in the body, so the enzyme cannot properly rid cells of waste material. There are no cures for most of the LSD and treatment is mostly symptomatic. However bone marrow transplantation and enzyme replacement therapy (ERT) have been tried with some success in some cases.
I hope that you can show your support for the RDSS on their Facebook page.
Or support the RDSS Piano Recital Charity Fundraiser.
Let’s come together in a heartbeat and help little Singaporeans like Chloe and Aleks by raising awareness of rare disorders, fighting for their right to survive and the need for treatment beyond economics and politics with (hopefully) government funding!
3 Ways to Wear – Spots and Stripes
2 days ago