~by: Elliot Aruldoss~
~pictures: Shawn Danker~
Chloe is a little girl diagnosed with a rare disorder known as ‘Pompe disease’. The disease weakens her overall muscles, including that of her heart. It is also such a rare disease that it is only found in 1 in 40,000 live births worldwide.
Unfortunately, the disease is only treatable, not curable, and the only treatment available to her is Enzyme Replacement Treatment (ERT). If left without treatment, her muscle weakness will lead to respiratory weakness, resulting in death from respiratory failure.
Whilst Chloe’s total medical costs are an estimate between the range of $200,000 to $300,000 a year, she is the first person in Singapore undergoing treatment for Pompe’s.
As such, Kandang Kerbau Women’s and Children’s Hospital (KK Hospital) and Genzyme (a pharmaceutical company producing the enzyme (Myozyme) that Chloe needs for ERT) have stepped in, in their own capacity, to help alleviate the high medical costs through various subsidies.
KK Hospital has approved an undisclosed amount from its KKH Health Endowment Fund, to help fund part of Chloe’s medical treatment; while Genzyme gives a discount on the drugs they produce to lower medical costs.
However, it is not enough. The disease is a potent one, rendering Chloe’s immune system weak making illnesses like the common flu fatal if not treated quickly. This means that Chloe is constantly moving in and out of the hospital, as she requires prompt medical attention to prevent further complications.
Her many medical treatments translate to additional medical fees and it is very difficult for Chloe’s parents to afford all this in the long run. Apart from this, medical costs will only continue to rise higher with factors such as Chloe’s weight (for every 1kg of growth in her weight, you need 20mg of the enzyme). The cost of caring for her at home is also a concern.
“She is fed from a disposable syringe and is still totally feeding on milk and everyday she is taking 4 to 5 types of medicine and we are on our own in this”, says Mr Kenneth Mah, Chloe’s father.
Chloe’s father also wished that the Singapore government, like other countries even in Asia, would play a part in setting aside funds to support treatment of rare disorders like Chloe’s.
‘The subsidies given to us at the moment are definitely not enough,’ says Mr Mah. “Rare disorders are a minority so I hope the government can consider setting aside a bit of funds to support rare disorder patients.’
He hopes that a scheme similar to Medifund Silver (a scheme where a sum of money is set aside for the elderly) will be set up for those that are afflicted by rare disorders.
Mr Mah also said that he had researched on the practices of other countries such as ‘Taiwan, Hongkong, Malaysia, Japan, Korea and Australia’, which offer government subsidies and support for people suffering from rare disorders; and the research on these practices reveals that in some of these countries, the government pays and funds the medical expenses entirely. He intends to submit his research to the appropriate government agency soon.
“Rare diseases affect children more than adults”, says Mr Mah in explaining why he intends to work with KK Hospital to raise awareness about the illness. ‘I think this is the right place where you see more of these kind of cases coming in. I have actually proposed for KK to be an ERT center, where patients with rare disorders come to be treated.”
He hopes that the government can then work through KK Hospital to provide funds and support for patients suffering from rare disorders such as Pompe.
Chloe herself is a fighter, say both her parents. “We saw with our own eyes that she was trying very hard during her physiotherapy sessions in the hospital and that she was getting stronger and happier everyday”, they recount. “As parents we refuse to give up, but we will leave her to decide (for herself).”
They also added that they “believe and have confidence in the government” and were sure the government “will do something” as the new government reviews the healthcare policies.
“She will go to school”, says Mr Mah positively. “Brain-wise, she is normal and shows intellectual ability. Who knows, she could still become a lawyer or a doctor next time.”
Chloe’s case is a rare one and most unfortunate but according to her parents, with treatment, her condition has gradually and visibly improved. She can now sit up independently in a chair, although she still hunches and sometimes topples over when she gets tired, because of her weak muscles. She is now also becoming capable of more motor skills and stronger movements.
TOC hopes that the government will not let people like Chloe ‘fall between the cracks’, remaining apathetic to those in need.
On the 3rd of September 2011, RDSS launched its first fundraiser event at KK Hospital. The charity fundraiser, called the ‘Rare Diseases Society of Singapore (RDSS) Piano Recital Concert’, was held in the auditorium of KK Hospital
The event was organized by RDSS and John Monteiro International Music School to raise funds, through ticket sales, which would go directly into paying off the high medical costs incurred from Chloe’s medical treatment.
The fundraiser featured Piano pieces performed by John Monteiro himself and his students who are musicians at his Music School (John Monteiro International Music School).
Two other children, Aleks and Adelyn, also performed piano pieces at the event. Aleks is a five-year old boy suffering from another rare disease called ‘Gaucher’ (another enzyme-related disorder) and Adelyn is visually impaired.
The fundraiser even if organised on short notice was a success as only 10 seats of the 230 available were unoccupied.
To donate to the ‘Save Chloe’ campaign, click HERE.
More information on Chloe HERE.
This article was edited on 5 September 2011 at 11.15am, after it was first published for clarity.