Clovis 12-year-old battles against stroke damage

By JACKIE JADRNAK

ALBUQUERQUE (AP) - Twelve-year-old Samuel Spurgeon is a big fan of Spider-Man, the wall-crawling superhero. Samuel might not be able to swoop between tall buildings, but his real-life accomplishments have made him a hero to his fans at the New Mexico Heart Association/Stroke Association.

The Clovis boy lost his ability to walk and gained it back again. A tough spelling-bee competitor, he is relearning how to read. He is fighting to be able to talk again. And after five months of getting nourishment through a tube, he was able to enjoy the first food in his mouth - mashed potatoes from KFC - in February.

Samuel is a stroke survivor. Actually, he's the survivor of a series of strokes. No, not all victims are older adults.

"'Children don't have strokes.' I've been told that so many times," said Carla Spurgeon, Samuel's mother.

It's not common, but they do have strokes. In Samuel's case, the strokes are a result of moyamoya disease. In this rare condition, the major blood supplies to the brain become blocked, resulting in the growth of small, abnormal blood vessels that try to make up for the lack of blood flow.

Carla Spurgeon vividly remembers the day in November 2001 when she was helping Samuel with physical therapy to recover from a soccer injury. While going through the exercises, she noticed he couldn't keep his left arm lifted. Later, his whole left side seemed to be drooping.

A trip to the hospital and a series of tests revealed that the arteries to his brain were severely blocked he was getting only about a tenth of the normal blood flow, said his father, Michael Spurgeon.

It was only after a referral to a neurologist in Lubbock that the family finally was told Samuel had had a stroke and that they first heard about moyamoya disease.

In retrospect, they believe he had been suffering from blocked blood flow for a considerable time. "A few months before the stroke actually happened, we were visiting family in Illinois," said Michael Spurgeon. An older family member had had a stroke years ago, and relatives commented that Samuel was walking in such a way that he "looks like a little old man who had a stroke," Michael Spurgeon said.

But even when he was 5 or 6, Samuel sometimes would cry or scream, saying that he felt as if he were falling, his father said. "It looked like a seizure," Carla Spurgeon said, "but they could never find anything wrong."

Very little is known about moyamoya disease. It's named after the Japanese word for "cloud of smoke," referring to the appearance of a proliferation of small, abnormal blood vessels. It's believed to have a genetic component, but its cause is unknown, according to information from the National Institute of Neurological Disorders and Stroke.

There is no cure. Treatment generally involves giving blood-thinners to prevent stroke and performing surgery to reroute some blood vessels in the scalp through the skull to the brain.

After his first diagnosed stroke, Samuel had a stent a tiny, metal coil placed in an artery to his brain to help open up the blood flow.

Still, he had two other strokes, the latest after surgery in Dallas last summer that rerouted a blood vessel to his brain.

Michael Spurgeon, who was staying in the hospital with his son, said Samuel "woke up at 4 a.m. and said, 'I have to go to the bathroom, Poppa.' That was the last thing he said. When he woke up again at 6 a.m., he couldn't talk."

While also raising Samuel's three sisters, the parents split their work shifts during his latest recovery. Michael Spurgeon, who is in the U.S. Air Force, took an evening shift at the base, while Carla Spurgeon worked during the day as a secretary at Samuel's elementary school.

One thing is clear. The inability to talk doesn't keep Samuel from communicating.

"He probably has 20 to 30 words almost everyone can understand," Carla Spurgeon said. "And there are others I understand." He has learned some simple sign language and uses a computer with a synthesized voice to express basic ideas.

And, as his parents told his story, his participation was animated. He frowned and turned a thumbs-down at the low points of his tale. He grinned and gave a thumbs-up at the high points. When his father said it probably will be a while before Samuel can play soccer again, the boy snapped his fingers with an "aw, shucks" expression.

And for the real triumphs - such as the announcement that he would enter seventh grade next school year - he threw his arms up in the air and offered a "yeah!"

It's that spirit that seems to have captured the hearts of most who know him. "He's our hero," said Patti Ross, youth market director for the local Heart Association. "This is a family with incredible faith."

Samuel recently appeared at Manzano Day School, where students held a rally for Jump Rope for Heart. In that program, teams of students jump rope and raise money for research and education related to heart disease and stroke. Samuel also led the Heart Association's fund-raising walk in Albuquerque.

"He's been a wonderful advocate in the schools," Ross said. "Kids like to help other kids."

Michelle,
Thanks for the inspiring article! There can be life after MoyaMoya! [smiley=sayyes.gif]
Thanks,
Tamara   Applejac

Little by little the news will get out there and hopefully save some people from having to go thru the "suprise attack" that so many MM patients suffer.