Who is Chloe?
Chloe was born in November 2009 and was diagnosed with Pompe Disease at 7 months old. Despite the many uncertainties and fears faced initially, Chloe showed exceptional courage to fight the disorder, overcoming death several times. She became the first baby to be diagnosed in Singapore with Pompe disease and to undergo the Enzyme Replacement Therapy (ERT) for the treatment. Every week, Chloe undergoes ERT at KK Hospital, for which the treatment cost per year amounts to an approximate of $500,000.
In 2012, Chloe underwent PEG surgery and she now has a feeding button to help her with her food intake. In 2015, Chloe met another milestone when the cardiologist removed her medication for her heart as she had no risk of heart failure anymore. Chloe has to attend various therapies from OT, PT and SLT. Recently, she has also started having Educational and Art therapy from home while she continues to receive education from Rainbow Centre.
Chloe went under the knife again for tracheostomy in October 2019. This was done to better support and manage her respiratory issues. She continues to do well in health and has started to develop her interest in music in recent times.
How did we keep going?
RDSS pitched her story to the media and she was subsequently featured in various media such as Strait Times, The New Paper, Lianhe Zaobao, Wanbao, The Online Citizen, Mediacorp Channel 5, Channel 8 and Motherhood magazine.
Her sharing has helped to raise awareness of rare disorders in Singapore and even brought many families, who are in walking in the same journey, together. The Society is assisting her, under the “Power for Life”, “Home-based Learning Scheme” and “Medical Intervention Scheme” program.
We want and have this to say:
Every child, regardless of their different needs, has the rights to live and be given the fair opportunity to grow and develop their abilities. We are here to love and offer them the quality of life.
– Kenneth Mah, father of Chloe
Chloe’s living needs add up to almost $3,500 a month and the Society hopes to raise more funds to assisting the family to lessen their financial burden. You can pledge your support for Chloe by contributing directly to her CDA (Child Development Account).
We know you care because Love is not Rare!