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…
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.
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…
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…
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…
