Chloe was born in November 2009 and was healthy until she turned six months old. Two weeks after her admission into the Intensive Care Unit, Chloe was diagnosed with Pompe Disease, a very rare genetic condition that weakens all the muscles in her body, including her heart.
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 with Pompe disease and to undergo the Enzyme Replacement Therapy (ERT) in the history of Singapore. On a weekly basis, Chloe undergoes ERT at KK Hospital, for which the treatment cost per year amounts to an approximate of $300,000. Nevertheless, ERT which is a lifelong treatment, has proven to help Chloe’s heart condition and has improved overall muscular function. Apart from her ERT, Chloe attends regular therapies to improve on her mobility and the parents remained positive that one day, there will be a cure for Pompe disease.
In 2012, Chloe underwent PEG surgery and she now has a feeding button to help her with her food intake. Although she depends entirely on fluid intake, Chloe has grown exceptionally well and stays healthy most of the time. In 2015, Chloe met another milestone when the cardiologist removed her medication for her heart as she has no risk of hearth failure anymore.
RDSS pitched her story to the media and she was subsequently featured in various media such as Strait Times, The Newpaper, Lianhe Zaobao, Wanbao, The Online Citizen, Mediacorp Channel 5, Channel 8 and Motherhood magazine.
Her sharing has increased awareness on rare disorders in Singapore and brought many families together. The Society is assisting her, under the “Power for Life” program, with $80.00 per month to help the family with the utilities charges. Chloe’s living needs adds up to almost $3,500 a month and the Society hopes to raise more funds to help in assisting the family. You can also pledge to support Chloe by contributing directly to her CDA (Child Development Account).
Chloe’s low muscle tone did not affect her learning ability at all. At the age of 15 months, Chloe was able to recognised “A to Z” and “1-10”. By the age of 4, she is so familiar with iPad an the parents are hoping to us the tablet as a communication tool for her. Today, Chloe’s heart function is perfectly normal and her overall progress is so good that everyone called her “the little angel from God”.
You may follow her journey via her website and facebook page.