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A mother's desperate love

PHUKET: Single mum Yuparate Kiawwan does not sleep at night. She can’t. If she does her son, Patchara “Petch” Samana, may die.

Author: Nattha Thepbamrung

Saturday 22 September 2012, 02:30PM

Now she’s on a mission to find B230,000 to buy a new respirator, to keep her son, born with a rare genetic disorder, alive and breathing during the night, so she can rest easy.

“When he was born, I noticed unusual signs. He didn’t cry or move much,” Mrs Yuparate says.

After 12 hours a pediatrician examined him and diagnosed him as having Prader Willi Syndrome (PWS), a disorder that affects one in 10,000 to 25,000 people.

Tests at Chulalongkorn Hospital in Bangkok when he was a month old confirmed the diagnosis. Petch stayed 15 days in the hospital’s nursery.

The child was unresponsive and could not breast-feed, so had to be fed through a tube.
“The treatment at Chulalongkorn hospital continued for a while,” Mrs Yuparate says, “but the treatment had to stop when he was about five years old because we could not afford the transportation costs from Phuket to Bangkok and the cost of the medicine, which was not covered by the 30-Baht Health Care Scheme.

“Then my husband and I divorced [11 years ago]. I had to work alone. It was hard to continue with the treatment.”

Time passed. Petch grew, learned to feed, and life became more normal. No more traveling up and down to Bangkok. He began to go to school, learning in a special class for children with learning disabilities.

But when he reached the age of 11, another effect of Prader Willi Syndrome began to take hold.

He gained weight rapidly. Even when Mrs Yuparate controlled his food intake, he still grew fatter.

That’s when the sleeping disorder, another effect of Prader Willi, began. Frighteningly, he would stop breathing in his sleep.

Partly this was because of his weight causing Obstructive Sleep Apnea (OSA) – a condition in which the throat is constricted by the fat around the neck and the sleeper stops breathing.

But while sufferers from OSA usually start breathing again on their own, Petch did not. The only way to get him to do so was to wake him up.

Treatment began again, this time at Ramathibodi Hospital in Bangkok.

They tried to get Petch to use a respirator with a face mask, but he would not. So instead, he was fitted with a tracheal tube to ease his breathing.

Things got a lot worse. While at Ramathibodi, Petch had an episode of diabetic shock, brought on by his overeating. He was rushed into the ICU.

“At that time, we had had no recommendations on his diet. As a result my son had developed diabetes as an effect from the eating disorder.

“I had no guidance from the doctors about this and my son was returned to the ICU again, a year later, with diabetic shock.”

Eventually, Petch recovered, the tracheal tube was removed and he went home.

But he continued to gain weight. By the time the boy had passed his 12th birthday, he weighed a shocking 100 kg and the breathing problem had become much more severe.
“I rushed him to the Prince of Songkhla Hospital [in Songkhla],” Mrs Yuparate recalls.

“The medical team were helpful. They provided a bigger respirator on a stand which could help him breathe.

QSI International School Phuket

The hospital also tested his sleep patterns. They found that he stopped breathing on average 12 times a night.

“This was why the doctor changed the respirator to a larger one. My son was big and he stopped breathing too often.”

The hospital loaned Mrs Yuparate a Bi-level Positive Airway Pressure (BiPAP) respirator to take home, gave him medication to help him lose weight, and drew up a diet plan to counter the diabetes.

Life seemed as if it was once again settling down.

In the calm after the storm, Petch lost some weight – he is now 86 kilos – and no longer rejected the respirator. Mrs Yuparate could sleep at night.

But two years ago the respirator broke down.

Mrs Yuparate sent it back to the hospital in Songkhla but there were no spares to fix it. Apparently, two years later, there are still no repairs.

“My son has been sleeping without the BiPAP for almost two years until now” she said.

During the day, he breathes normally. Now 16, he goes to school. He is in grade 6, where his fellow students are 11 years old. He is no taller than they – he is 146 cm tall – but he is very fat.

He is also prone to outbursts of rage and violent behavior towards the other students because, his mother says, of the insufficiency of oxygen to his brain.

“A recent examination showed that skin around his neck is very thick and it constricts his trachea. This happens with all Prader Willi Syndrome patients. “All the doctors say he can’t breathe normally because of the syndrome – it’s not because of other causes.

Now his nighttime breathing problem is worse than ever. “I have to make sure he sleeps on his side. If he sleeps on his back, he cannot breathe. I have to stay awake almost all night, waking him up whenever I notice he has stopped breathing.”

The only solution is a new respirator but Mrs Yuparate simply doesn’t have the money. Before the divorce she had a job but she had to quit to look after Petch.

Now she and her brother have a small car repair business, which keeps the two households going but having to stay awake most of the night means she is desperately tired during the day and cannot work.

The business provides a living for her, her brother and Petch, but not enough for the expensive BiPAP respirator.

Mrs Yuparate has battled for 16 years to keep Petch alive, and the battle is far from over. She has invested exhausting amounts of love in that battle. But love is not enough.

B230,000 is needed to buy the new respirator.

She has been trying to raise the money, using social media such as Facebook, but so far it’s not nearly enough.

To donate, contact Mrs Yuparate on 090-069-7488 or 080-693-4268, or deposit funds into her bank account: Siam Commercial Bank account No. 897-208-0176, Chaofa Rd 2 branch, account name: Mrs Yuparate Kiawwan.



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