Girl given one year to live celebrates 5th birthday
When Chloe Mah was just six months old, she was diagnosed with Pompe disease.
It is an incurable genetic condition that causes progressive muscle weakness.
Doctors told her parents that she would not live past her first birthday.
But the frail little girl overcame the odds and celebrated her fifth birthday earlier this month.
Her father, Mr Kenneth Mah, 44, even quit being a businessman in 2011 to care for her.
He admitted that it was not easy at the beginning, saying: "I had to learn how to operate the medical equipment and handle her needs. Feeding her round the clock was very tiring as well."
Mr Mah had to feed Chloe every three hours using a tube that goes through her stomach.
He also learnt how to operate the monitor used to measure Chloe's heart rate and the oxygen saturation in her blood, and the suction machine that helps Chloe remove secretions from her throat.
He said that Chloe's needs increased as she grew older, so the family has hired a helper to look after her.
Because of her condition, Chloe is unable to speak and communicates through pointing or making different sounds.
CAN'T WALK ON OWN
She is also unable to walk on her own. When she travels, the family has to take along her wheelchair and medical equipment, which weigh about 25kg in total.
As part of her treatment, she goes for Enzyme Replacement Therapy at KK Women's and Children's Hospital every fortnight. This helps her heart condition and improves muscle strength.
She also attends regular physiotherapy, and speech and occupational therapy sessions.
This adds up to the Mahs spending about $250,000 a year on Chloe's medical fees.
Despite all the treatment she undergoes, Mr Mah said that Chloe remains cheerful: "She gets cheeky and likes to smile, especially with mummy."
Madam Patricia Ng, 40, a training and development manager, said: "When I sing nursery rhymes to her in an animated manner, she gets amused and laughs."
The couple also has a son, Cayden, who is two years old.
Chloe occasionally fights for attention with her brother, but has learnt to accept him.
Mr Mah said: "She knows how to share things with him, and allows him to wipe her saliva."
This September, Chloe started attending lessons twice a week at Rainbow Centre in Margaret Drive, a campus for children with special needs.
Madam Ng said: "She used to be cranky and she was reluctant to follow instructions.
"But now she has made friends and is adapting well."
In 2010, the Mahs' friends set up a website and Facebook page to raise money for Chloe.
The Mahs also hope to share about the disease and their daughter's journey through these channels. All donations will go towards her medical and educational needs.
Interested donors can go to savechloe.com or facebook.com/savechloe to find out more.
In the meantime, the little girl's parents continue to stay positive.
Mr Mah said: "No matter how tough life is, I have never thought of giving up. She is a special kid and I am a dad with a special mission."
WHAT IS POMPE DISEASE?
Pompe disease is a neuromuscular disorder that affects about one in every 40,000 live births.
The disease can manifest itself shortly after birth or at a later stage, when the patient is an older child or even an adult.
Symptoms include extreme muscle weakness and breathing difficulties.
Although there is no cure for the disease, several types of care and treatment can help.
Enzyme replacement therapy is one of them.