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.
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…
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…
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…
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…
Death is not something we like to talk about yet it’s something we all have to go through… Are we prepare when facing death? Read about what we just went through with Chloe here….