Tuesday, September 18, 2012

Girl, 4, suffers from rare disease that causes tummy to bloat

SINGAPORE - 4-year-old Zecia Chew suffers from a rare condition that has caused her tummy to bloat and look like a pregnant woman's.

She suffers from Gaucher's Disease - a genetic condition where a fatty substance called lipids accumulates in cells and certain organs.

The disease is characterised by the enlargement of the liver and spleen, fat hoarding and a distended abdomen.

Her limbs are also painfully thin, as they have difficulty absorbing nutrients. Being extremely weak, Zecia is constantly in danger of falling and hurting herself.

And if she falls and hurts herself, her bruises take weeks to heal, as her blood platelet levels are extremely low due to the disease.

It is believed that there are only two known cases of Gaucher's Disease in Singapore, Chinese daily Shin Min reported.

As both of Zecia's parents have no history of the illness, it came as a great shock to them when their daughter was diagnosed with the disease.

Unluckily, medical tests revealed that both of them are carriers of the gene. If so, a child has a 25 per cent chance of inheriting the illness.

The first sign that there was something wrong with little Zecia was innocuous enough, her parents Sharon and Avan said.

They noticed that her belly was growing faster than the rest of her tiny frame. Yet she didn't seem to be eating that much food. Worried, they brought her to see a number of medical practitioners, many of whom said she had "poor digestion", "too much wind" or "a weak stomach".

When Zecia finally mastered walking, she did so with huge difficulties, often tripping and falling.

Finally in October 2011, Zecia's bloated tummy, poor sense of balance, frequent complaints of tiredness and many other seemingly unrelated symptoms became too much for her parents to dismiss as "normal" for a child her age.

On October 18, Sharon and Avan received the devastating news - Zecia was suffering from a disease so rare, they had never even heard of it.

$12,000 medical bill a month 

Even with treatment, which costs a hefty $12,000 a month, the swelling of her tummy has just gone down slightly.

Zecia has to go to a hospital every two weeks to have an intravenous therapy drip inserted into a vein for medications to be introduced into her body. The treatment includes enzyme replacement therapy, which helps to reduce the enlargement of the liver and spleen, resolve blood abnormalities and improve bone density.

Without a suitable bone marrow transplant, Zecia will have to undergo the treatment for the rest of her life.

As she cannot find a suitable bone marrow match among her family members, the family is hoping that Zecia 's five-month-old sister might prove to be her saviour.

As Zecia grows older, she requires a larger therapy dosage each session. This means that her $12,000 monthly medical bill will only grow bigger over time.

Her father Avan, 33, is working as a hotel employee, while her mother Sharon, 28, is working as a shipping accountant.

However, the couple's combined take-home pay only comes up to $3,000 a month.

They are currently relying on a medical subsidy of $30,000 to help foot the bills, but the fear is that the money will soon run out.

The treatment bills are too heavy for the family to bear. But untreated, Zecia will almost certainly not survive.

A 'princess' birthday party 

To celebrate her fourth birthday, which falls on this coming Friday, Make-A-Wish Foundation organised a "princess" themed party at Siloso Beach Resort last Sunday.

Zecia, who loves swimming and everything princess-related, had wished for a fun and memorable holiday with her parents and her baby sister.

Upon arrival at the resort, Zecia and her family were greeted by the welcome party dressed in Disney Princess costumes.

The party saw more than 30 relatives and friends invited, and dressed in her very own princess costume - complete with a tiara, wand and glass slippers - Zecia celebrated the next few hours with games, balloon sculpting performance and even a magic show.

A spokesperson for the foundation said after visiting the family, they found out that Zecia especially misses the times the family travelled to China together. Thus, they decided to fulfill Zecia's wish of enjoying another holiday with her family.

The celebration was continued over the next two days, with visits to Underwater World Singapore and the Dolphin Lagoon.

Make-A-Wish Foundation has also agreed to help with fund-raising activities to ease the medical burden of the family.

Interested donors can call the foundation 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.
 



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