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In a village in Alaska, a mother and her deformed son find salvation.

KECIA Weatherwax is convinced her son was healed not just by surgeons, but also by this misty archipelago she sailed to all those years ago.

An Alaskan village where a "mad Indian", as she describes herself, would be entitled to demand help for her Native American child, born with a rare genetic mutation that gave him a misshapen head and bulging eyes.

A place where her father, a Tlingit elder and member of the tribal council, commanded the respect that led others to accept his grandson.

A town that had seen enough trouble to know that it didn't come in the shape of a small boy's face.

James was snatched away minutes after he was born, flown to a bigger hospital while Weatherwax was still on the delivery table. The tiny boy looked shocking, she said, even to the doctors who regularly delivered babies from troubled pregnancies on Montana's Blackfeet Indian Reservation.

"They hadn't seen anything like it, they couldn't even name it. His hands were tiny spatulas with no fingers, his feet were clubbed, he had a cleft palate. And his head, the whole top of it was bulging," says Weatherwax, who learned her son had Apert syndrome, a condition that fuses bone in the wrong places and can leave patients struggling to eat, hear, and even breathe.

The years of surgeries he would require to live any kind of a normal life would cost hundreds of thousands of dollars.

"For me, it was like being skinned alive," Weatherwax remembers feeling as she contemplated returning to the impoverished Montana reservation with a child who needed so much help.

Back to her roots

Then it struck her: She needed to go home – to the remote island in the southeastern Alaskan rainforests where she grew up, a place where the natives had parlayed the state's natural resource wealth into modern clinics and good hospitals.

With the baby on one arm and a toolbox stuffed with her clothes in the other, Weatherwax headed with her father for the coast and boarded a ferry for Alaska.

When they arrived three days later, Jim Williams sat his daughter down with the soft smile she had come to know so well, cheerful and amiable on the outside, but under it was the resolve that has allowed the Tlingit to survive in this rough country for the last 10,000 years.

"Brace up," Williams told her. "Fly straight."

Klawock, a village of 850 set on Alaska's Prince of Wales Island, has always been famed for its majestic stands of spruce, snowcapped peaks and abundant runs of Pacific salmon. Several canneries, including Alaska's first, once lined the waterfront, but they closed long ago, along with the movie theatre. What remains is a cluster of small, weathered houses, along with a lumber mill, grocery store, school and clinic.

Williams built the family's cramped, simple house with money he earned as a construction worker in Oakland in the 1960s. Now, it has to do duty for three generations: Weatherwax moved in a decade ago, not just with James, but also an older daughter. Since then, she's had two more children. The small living room is a perpetual cacophony of shrieking toddlers and booming television cartoons, with uncles and aunts showing up periodically to scold or sit idly at the kitchen table.

Here, 11-year-old James is not a misfit. He rides shotgun in Williams' pick-up on the way to the tribal council offices, climbs in the boat behind him to set skates for halibut, and sways with his grandfather at ceremonial Tlingit dances.

When James plays basketball or runs with his slow, web-footed gait at cross-country meets, Williams is in the stands cheering for him. They sleep together in Williams' big bed, and when James' raucous apnoea snores pause for too long, his grandfather rouses him.

"When James was born, his grandfather just carried him around proudly. And because of that, he was always part of the community. Always," says Kay Schrammeck, who coordinates the special learning programmes that help James read despite his poor hearing and uncoordinated eye focus.

The early days were some of the hardest, Weatherwax says. James' tiny body was racked by seizures. "His brain didn't have room to grow in his head, and it was compressed, I could tell. I would hold him, and he would just start twitching in my arms," she says. "He was hurting."

But when she took the baby to the local Native American health clinic upon returning to Alaska, the nurse there at first shrugged dismissively, making it clear there were no surgical facilities to correct defects so profound. "What do you want me to do?" the woman said.

Weatherwax felt a fury rising in her. "I expect you to help us," she said.

A series of surgeries

Desperate to stop the seizures, Weatherwax traveled to a clinic in the state capital, Juneau. There, doctors said funds were available for her to take James to Children's Hospital in Seattle, Washington, which has a craniofacial surgical unit accustomed to dealing with conditions as rare as Apert syndrome, which occurs in one out of every 100,000 births.

The frequent trips – more than a dozen surgeries so far, plus follow-up visits – are arduous. Just getting to Seattle involves a half-hour drive to the port, a three-hour ferry ride to Ketchikan, then another short ferry ride and a two-hour flight.

The doctors in Seattle performed the first of what would become a long series of surgeries to split James' hands into fingers, close his palate and open his ears.

When he was two, doctors sliced open his skull from ear to ear and opened a space big enough for his growing brain, filling in the gap at the top of his head with grafts from his tiny ribs.

But he still looked odd – his eyes, with almost no sockets, projected strangely and could hardly close. His head ballooned up over his eyebrows.

When Weatherwax left the village briefly to take a job as a grant writer in the town of Fairbanks, kids on the playground there struck up a game of tag and made James "it" because he was "a monster".

Klawock was more accepting – maybe because James' grandfather was so influential. Maybe because it is a rough town where a lot worse things than Apert syndrome can happen to people.

Williams counts five people among his neighbours on the hill who've shot themselves; five of his uncles died on a skiff after trying to make their way home drunk.

Weatherwax's best friend not long ago drove inebriated off the road and drowned after she was thrown out of her car into a ditch.

"People made bad choices," Williams says.

Most people here don't seem to notice James' appearance at all, or are sidetracked by his infectious good humour. Johnny Roberts says he got to know James the day he confronted some boys who were bullying him. "He came over and gave me a big hug, and we've been good friends ever since," Johnny says.

One recent afternoon, the boys meet their friend Amber and run up to the park where 21 majestic Tlingit totem poles stand overlooking the village.

"Hey Johnny, how old are you?" James says presently.

"I told you, don't call me Johnny. Call me John-John."

"Hey John-John. How old are you?"

"You already asked me that a million times. I told you: 14."

"How old are you?"

"I'm old enough to get out of Alaska," Johnny says as he sighs. "I've seen enough of Alaska. I've seen 14 years' worth of Alaska."

They wander down to the dock, where James' uncle is getting his boat ready to go fish for halibut. A bald eagle glides overhead.

"Hi, eagle!" James shouts, craning his neck back awkwardly because his eyelids can't open far enough to see the sky otherwise. "Can I hop on your back, so I can fly?"

Johnny throws rocks into the water. James watches, then grows bored. "Oh, my feet want to walk to the ball park!" he announces.

Weatherwax left James' father when he made it clear he'd never accept a child so badly deformed. She married again and had two more children, but her husband was jailed recently for driving drunk and crashing his car.

"If you want to know what Kecia's life is like, I would use the word hell," says Williams. "Put yourself in her shoes. You're way the hell up here, far away from the hospital, trying to keep your head up high, keep a job, raise the kids, OK? And then at the same time think, 'I wonder if my son's going to have a heart murmur, what about moving his cheeks, how is he going to work with those hands?' "

A family's commitment

Williams, at 74, finds himself trying to be a parent to his young grandchildren while his daughter focuses on James.

When Weatherwax retreats to her room to read or spends an hour at the market just to get out of the house, Williams chases one-year-old Abby around the living room, heats up pizza rolls in the microwave for James, turns on Wizards of Waverly Place on TV, and puts on another pot of coffee to keep going.

"I'm retired. I'm supposed to be having two, three girlfriends calling me: 'I'll take you to the beach, I'll take you to dinner tonight!' And here I am changing diapers," he says.

These days, Williams and James – who's a precision passer and a decent dribbler despite having no knuckles – are a fixture at the local high school basketball games. The gym, during the dark, snowy winters, is the town's central gathering point.

In March, the Klawock high school team won the Class 1A state basketball championship, and most of the town turned out to greet the players on their return from Anchorage, forming a parade behind the fire truck and ambulance toward the Alaska Native Brotherhood hall.

Williams lifts James into the back of his pick-up. He fastens his coat.

"Holy cow! I feel like I'm going to be super speeding!" James shouts into the night.

"Put your hood up, son," Williams says.

Landmark procedure

Last fall, Dr Richard Hopper, head of the craniofacial surgical team at Children's Hospital, said James was ready for a landmark procedure he'd developed, which has the ability, unlike previous surgical corrections for Apert patients, to transform James' face into one that looks like any other boy's.

But it would involve a procedure so intense, Weatherwax could hardly bear to imagine it. They would slice open the top of his scalp, peel his face down to his jaw, and take saws and chisels to the underlying bones, pounding them into a more recognisable shape before folding and sewing the skin back into place. They would insert a plate where he had no forehead, build protective sockets for his eyes and pull the bones back from his airway.

Finally, they would attach a metal brace known as a halo to his head and teach Weatherwax how to turn the bolts with a screwdriver twice a day to slowly stretch the bones of his face apart.

James underwent the day-long procedure in January, and the transformation has been astonishing. From the awkward, bug-eyed visage that once drew stares, has emerged a winsome boy few would guess had lived through a 10-year craniofacial ordeal.

Weatherwax returned to Seattle in late March with her son for the big reveal – the removal of the head brace – and James is sitting tensely as a nurse offers him a soothing pre-op sedative that James and Weatherwax have come to call "the pink stuff".

He quickly recoils. "It'll make you feel really giggly, OK?" the nurse says. "I'll bet you're a kid who likes to laugh."

James starts crying.

"Calm down," Weatherwax says. "Think about going home tomorrow."

"I want Grandpa," James wails.

Then Weatherwax starts crying too. "You're all right. Just close your eyes. Think about Grandpa."

She gets up, walks to the other side of the room and impatiently wipes the tears off her face so he won't see them. Her legs are shaking. "I've been through this so many times, I'm thinking I want that pink stuff," she says.

The procedure itself takes only an hour or so, and afterward, Dr Hopper comes to check on him as James slowly awakens.

"Basically, it's over," he says to Weather-wax. "He can get back to his life, and you can get back to yours."

Of course, it's not really over. The ophthalmologist has suggested two additional surgeries on James' eyes, and a few years down the road, perhaps when he's 18, he will need yet another operation to correct the alignment of his jaw.

"We're never done," Weatherwax says. "Do you know that? We're never done."

James touches his nose, his cheeks, his jaw, measuring how they feel without a metal ring around his head. "Momma, when we were over there in the waiting room? I was dreaming about something," he says.

"What were you dreaming about?" she asks.

"Heading home." – Los Angeles Times/McClatchy-Tribune Information Services

Vitamin D-fence

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There have been a number of studies carried out in recent years on the benefits of vitamin D3 on a variety of conditions, such as cancer, heart health, diabetes and Parkinson's disease.

AS we age, our ability to fight off infections and other health problems diminishes significantly. The immune system, which is responsible for fighting infection, simply does not function as efficiently in older adults as in younger people.

A more serious impact of this are the higher rates of cancer, pneumonia, and influenza, to name a few.

Vitamin D3 helps our bones absorb calcium. But beyond bone health, vitamin D has now been found to be useful throughout the body, from strengthening the immune system, to controlling cell growth.

More than 2,000 genes (about 6% of the human genome) are regulated by vitamin D. The fact that every tissue in the body, including the brain, heart, breast, muscle and immune system, has receptors for vitamin D means that it is needed at optimal levels for these tissues to function well.

A startling fact is that almost 50% of the world's population is estimated to be at risk of vitamin D3 deficiency. It is a natural nutrient produced in our bodies from exposure to the sun. It is produced as a pro-hormone in the skin after sunlight exposure, and is then converted to the potent hormonal form only when the body requires it.

In reality, as we age, we lose the ability to convert sunlight to vitamin D in our bodies. However, such a deficiency can be overcome with supplementation of a bioavailable form of natural vitamin D3.

In recent years, there have been a number of studies carried out on the benefits of vitamin D3 on a variety of conditions, such as cancer, heart health, diabetes and Parkinson's disease.

It has been found that low levels of vitamin D in the blood are associated with elevated cancer risk. Compared to people with higher vitamin D levels, those with low levels have a substantial risk of developing cancer.

One of the first cancers to be identified as having a link to vitamin D was breast cancer. Now there is evidence that vitamin D lowers breast cancer risk, as it has been shown to block the growth of breast cancer tumours.

Many health experts recommend 1,000 I.U. to 2,000 I.U. a day of vitamin D3 for purposes of the reducing risks of conditions like cancer, osteoporosis, chronic inflammation, stroke, heart attack and flu, among others.

References:

1. National Institute of Allergy and Infectious Disease

2. Malaysian Oncology Society

3. Vitamin D council

4. Bilinski K, Boyages J. Association between 25-hydroxyvitamin D concentration and breast cancer risk in an Australian population: an observational case-control study. Breast Cancer Res Treat. 2013 Jan;137(2):599-607.

5. Amaral AF, Mendez-Pertuz M, Munoz A, et al. Plasma 25-hydroxyvitamin D(3) and bladder cancer risk according to tumor stage and FGFR3 status: a mechanism-based epidemiological study. J Natl Cancer Inst. 2012 Dec 19;104(24):1897-904.

6.Roskies M, Dolev Y, Caglar D, et al. Vitamin D deficiency as a potentially modifiable risk factor for thyroid cancer. J Otolaryngol Head Neck Surg. 2012 Jun 1;41(3):160-3.

This article is courtesy of Pahang Pharmacy. For more information, e-mail starhealth@thestar.com.my. The information provided is for educational purposes only and should not be considered as medical advice. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this column. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.

Fasting your health forward

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Looking for a way to cleanse your body system inside out? Try fasting!

AT the close of Ramadan, I'm sure many Muslim friends bade farewell to the month-long fasting with mixed feelings.

The holy month of Ramadhan is considered to be not just a time of cleansing for the body, but also for the mind and soul. Individuals who have truly internalised the intricacies of fasting appreciate it so much that many continue to fast in the following month of Syawal, one day after the Eid celebrations, and on specific weekdays for the rest of the year.

People who are practising a fast usually appear more tired and listless than usual, and for a good reason: the body is actually working harder than usual to sustain itself.

When one is fasting, the body system is suddenly faced with various new challenges. For starters, the digestive system is suddenly relieved of most of its "duties" for the month. To cope with the extra energy, the body uses it for other purposes, such as removing accumulated toxins and producing new body cells, particularly the immune system.

The body goes into a "repair mode", detoxifying the liver, colon, kidneys, lungs, lymph glands and skin. The digestive system actually undergoes spring-cleaning – cleaning the stomach lining and intestines, resulting in better digestion and absorption of nutrients.

As the body is deprived of its regular energy source from food, it resorts to the glycogen in the fat cells. This results in weight loss, which makes fasting the best way to lose weight naturally and effectively.

In fact, numerous studies prove that regular fasting reduces the risks of high cholesterol and insulin.

Not only that, fasting cuts off the food supply to abnormal growths in any part of the body, setting off an auto-healing process. The reduction of metabolism in a fasting individual is transferred into enhanced immunity and protein production.

As a result, one usually experiences a sense of rejuvenation when the fasting period is over. The production of new cells also offsets the release of anti-ageing hormones.

Good fasting routine

Although researchers recommend fasting to regulate blood glucose levels, people with diabetes need to practise extra caution when fasting to ensure that their glucose levels do not drop to dangerous levels – a condition known as hypoglycaemia.

Hypoglycaemia, characterised by intense sweating, shaking, irritability, weakness and fainting, can be dangerous, especially in the elderly who are often alone at home. Prolonged hypoglycaemia can lead to neurological damage, or even death, if left untreated.

As such, diabetics need to check with their doctors before beginning a fast. Most diabetics can fast successfully with the right dosage of medications and food control when breaking fast.

A common pitfall during the fasting month is the excessive intake of food when breaking fast. The sudden spike in energy sends mixed messages to the body system, apart from overloading the digestive system and reversing all the benefits reaped from the earlier fasting.

A better option would be to consume normal amounts of food in one meal during the breaking of fast, with smaller meals or snacks later on. This will help the body adjust better to the fasting and non-fasting periods.

As the Muslim fast prohibits the intake of liquids, dehydration and reduced blood sugar levels may become a problem. Rather than taking huge amounts of water when breaking fast, it is advisable to take smaller amounts of liquids at regular intervals when not fasting, to compensate for the water loss.

Fibre intake from fibrous fruits and vegetables ought to be increased to help bowel movement. Opt for fresh, uncooked vegetables such as ulam-ulam to enjoy the increased nutrition that might otherwise be lost as a result of cooking.

Fasting around the world

Although fasting is most commonly associated with Ramadan, fasting or abstaining from food for religious reasons is actually practised around the world by other religions. Just like the Islamic fast, these other religious fasts also focus equal importance upon spiritual, as well as physical healing.

An example is the Greek Orthodox Christian fast, which lasts for 180-200 days throughout a year. The main fasting periods are 40 days before Christmas (Nativity fast), 48 days before Easter (Lent), and 15 days in August (Assumption).

The Nativity fast involves abstinence from dairy products, eggs, meat and fish; whereas the Lent fast means abstaining from dairy products, eggs and meat. Some people may also choose to give up a personal habit during Lent, such as smoking, alcohol, junk food or movies, as a form of repentance.

These dietary restrictions result in heavier dependence upon bread, fruits, nuts, vegetables, seafood and legumes, which is almost vegetarian in nature. Medically speaking, the Greek Orthodox Christian fast is shown to reduce body mass, protein and total fats. The increased fibre intake has a beneficial impact upon serum lipid levels.

Another popular fast is the Daniel fast, which takes place for either 10, 21 or 40 days. Basically, the fast involves abstaining from animal products, refined carbohydrates, food additives, preservatives, sweeteners, flavourings, caffeine and alcohol.

Food choices are restricted to fruits, vegetables, whole grains, legumes, nuts, seeds and oil. As the dietary restrictions result in a mostly vegan diet, this fast has been shown to reduce blood pressure, blood lipids, oxidative stress and increase insulin sensitivity.

In conclusion, fasting is a good way to stress the body system back into shape after a year of daily feasts. It is important that the dietary restrictions are accompanied by increased introspection, mindful prayer and thoughtfulness, which will make a fast holistic and complete.

So try fasting for self discipline and better health.

Datuk Dr Nor Ashikin Mokhtar is a consultant obstetrician & gynaecologist (FRCOG, UK). For further information, visit www.primanora.com. The information provided is for educational and communication purposes only and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader's own medical care. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this column. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.

Kredit: www.thestar.com.my

Ahad, 18 Ogos 2013

The Star Online: Lifestyle: Health

The Star Online: Lifestyle: Health

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