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 will need a trachea but we were hoping it comes later in her life. But if God wants it to happen now we accepted it.
Read about how it happened and she coped with it here.
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.
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…
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.
The Extraordinary Journey… Since 2016, daddy has been involved on Chloe’s school as a parent volunteer with their sharing programme. He was invited to reflect in his caregiver journey and we thought it will be nice to share with you here….
In 2011, we spent around 4 months to publish an information paper on how patients diagnosed Pompe Disease receive reimbursement for their ERT. It was a very difficult journey to begin with knowing Singapore doesn’t have any funding to support us. As a middle in-come family and staying in a condominium with our parents, this…
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…