We are proud to have been part of RDSS Piano Recital, in support of children with rare diseases. Our online Wishing Well portal will be extended to help the fundraising incentives for the children in the Rare Disorders Society of Singapore, so donors can now donate online.
The night began with children with various skill levels from John Monterio International School playing piano pieces they have learnt. Adelyn Koh, our beneficiary from our Wishing Well program also on piano, also played 3 short songs she had composed herself.
The finale ended with the great John Monterio playing two self composed pieces.
The finale ended with the great John Monterio playing two self composed pieces.
About Adelyn Koh:
Adelyn is 9 yrs old, born with a rare eye disease, Peter Anomaly, one of the two only cases in Singapore. At a young age, she has the potential to be a brilliant pianist and has an exceptionally vibrant and cheerful personality.
She learnt the piano since 3 years of age and is now in grade 4 and obtained a distinction for her last piano exam. She has an outstanding award from her piano school in 2008 and performed in President Star Charity in 2010 & 2011.
For her wishing well request, she would love to have a piano. Unfortunately, she comes from a single parent family that needs to call for 2 other siblings other than Adelyn herself. The family is unable to provide her this piano. Although she does own a keyboard, where she composes some of her pieces, playing on a piano makes a great difference to her, because it feels different. Every feeling and touch makes a great difference to Adelyn, who relies on this sense of touch as she is blind.
She also dreams and wishes to cut a CD with a compliation of her compositions one day. Hopefully she can use this to showcase her potential and create a career for herself in future, despite her disability. Help us grant her wishes on www.wishingwell.org.sg
Wishing Well is also in support of Chloe, a child from RDSS.
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.
For more information, follow this link:
http://theonlinecitizen.com/2011/09/chloe-the-little-girl-who-refuses-to-give-up/
