Follow the inspiring stories of four individuals under pediatric palliative care as they and their families navigate the unexpected realities of life and death with courage and love. From 2-year-old Nayla to 39-year-old Edwin, we delve into the unique challenges of their daily lives and witness the hope and resilience they carry with them. Chloe…
On 28th Sept 2023, Daddy Kenneth was conferred the Singapore Silent Hero under the “Outstanding Adult” category. The award was presented to daddy by our Deputy Prime Minister Lawrence Wong during the ceremony held at Shangri-La Singapore hotel. Daddy, founded the Rare Disorders Society (Singapore) with Mummy Patricia in 2011 after Chloe was diagnosed with…
We were invited to share about Chloe and our journey to mark 2021 International Pompe Disease Day (14 April). Though this sharing, we hope to raise the awareness on rare diseases in Singapore and having more people to learn about what rare disease community. We can read about the story here.
In October 2019, we made a very tough decision to put Chloe through tracheostomy. It was a start of a new journey for of all of us. It hurt so much to accept the fact that Chloe will need a trachea tube now than later in her life. We don’t deny the fact that she…
In 2011, we started a Save Chloe campaign selling CNY goodies to raise fund for Chloe’s needs. It was a huge success as we raised over $10,000 every year. The yearly campaign came to an end in 2017 and we are looking forward to having new ideas to support Chloe. Read about the campaign here.
Chloe celebrated her 5th birthday and it was a milestone that we never dare to dream of. We thank God for protecting her and giving us the chance to continue having her with us. It was amazing to walking this far with her! We do not know how many 5 years we will have with…
Since 7th month old, Chloe was unable to swallow due to weakening of her skeletal muscles. She was on long term NGT feeding until 2012 where the doctor recommended feeding button for her. It took us awhile to make the painful decision because we were hoping she could manage swallowing within having to get a…