Little baby Zecia
Zecia Chew just celebrated her fourth birthday last September. Yet she isn’t like any normal four year old running and tumbling around. Little Zecia Chew has a rare and incurable disorder, but this doesn’t stop her from living as normal a life as possible.
What is Gaucher’s disease?
According to medical journals, Gaucher’s disease is a rare, genetic disorder that causes too much of a substance called glucocerebroside to build up in your spleen, liver, lungs, bones and sometimes in your brain. The buildup prevents these major organs from working properly. Some symptoms include a bloated almost distended stomach and thin limbs.
There are three known types:
Type 1, is the most common form and can occur at any age. It causes liver and spleen enlargement, bone pain and broken bones, and in more serious cases, lung and kidney problems.
Type 2, causes severe brain damage and usually appears in infants. Most children don’t live to see their second birthday.
In type 3, there may be liver and spleen enlargement, and signs of brain damage will appear gradually.
Treatment options for types 1 and 3 include medicine and enzyme replacement therapy. These are usually very effective, however there is no known cure currently.
Little Zecia suffers from type 1 Gaucher’s disease and is one of only two people known to have the disease in Singapore.
A shocking revelation
Both Zecia’s parents were frantic with worry when they noticed that Zecia’s belly was growing faster than the rest of her tiny frame and she did not seem to act the way other kids her age were acting. She had a poor sense of balance, was frequently tired and had painfully thin limbs. It took a while for doctor’s to diagnose Zecia, with many dismissing it as poor digestion or wind. She was eventually rightly diagnosed by a specialist with Gaucher’s disease.
The fact that the disease was so rare that both parents had not even heard of it, did nothing to calm their nerves. What was worse was the fact that Gaucher’s has no known cure.
A hefty bill
Zecia is currently on medication and has to go to the hospital every two weeks to have an IV drip inserted into a vein for medications to be introduced into her body.
The treatment includes enzyme replacement therapy. This helps to reduce the enlargement of the liver and spleen, resolve blood abnormalities and improve bone density. Yet this is not a long term solution and the treatments costs a whopping $12,000 a month, much more than her working parents can afford.
Remaining hopeful
There is hope for Zecia yet, as a bone marrow transplant could prove to be her key to survival and leading a relatively normal life. Without it, Zecia will have to depend on enzyme replacement therapy her whole life. Unfortunately, both her parents are not a match and won’t be able to donate their bone marrow.
A princess in her own right
Despite the difficulties that face her and the pain she goes through, Zecia remains cheerful and thinks about others before herself. Her birthday wish was to have a fun and memorable holiday with her parents and her baby sister. The good people from Make-a-wish foundation made that come true for her with a princess themed party weekend held at Sentosa.
Help little Zecia
To help little Zecia Chew in her quest to survive, you can make a donation to the Make-a-wish foundation by calling them at 6334 9474 from 8.30am to 5.30pm on weekdays for more information, or email info@makeawish.org.sg.
A donation can also be made by visiting her Facebook page at www.facebook.com/SaveLittleZecia.
Source: Girl, 4, suffers rare disease
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