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'Matthew has gone home to be with the Lord'

"Matthew Wilkerson's narrow hospital bed, covered with a brown-patterned tan blanket and occupying a prominent place in the tiny living room of his mother's basement apartment, is empty.A small, gray-and-white stuffed elephant, brown-striped tiger and white-spotted cow rest on the pillows, with various cards and tributes. In the center is a photo of Matthew, a sweet-faced boy with soft red-blond tendrils of hair curving over his forehead and unexpectedly mischevious eyes.A dry-erase board divided into thirds for medical updates, behind the bed, told the tale:Matthew got his angel wings, his mother, Patricia Anderson, had written on her part of the board.Next to that, his home-care nurses wrote, Matthew went home to be with the Lord.That was April 2, the day Matthew James Wilkerson's lifelong battle with birth defects ended. He was 11.He had a very, very strong fighting spirit. He loved people, said his mother. He loved to go to the mall. He thought all the people were there to amuse him. He loved being around people.Despite chromosomal abnormalities that made him unable to walk or talk, made him legally blind and forced him to eat through a feeding tube, Matthew defied the medical prognosis for his conditions. He lived his short life fully, Anderson said. Matthew was born with a condition called Trisomy 16. Every cell in the body should contain 23 pairs of chromosomes, but a person with Trisomy 16 has an extra chromosome on the 16th pair. The condition varies in severity, according to a Web site for the disorder, www.tristomy16.org.A similar chromosomal abnormality is responsible for Down Syndrome, in which the 21st pair of chromosomes has an extra part.But Matthew had an additional complication, said Dr. Susan Reimer, one of the pediatricians who worked with him at the Kitsap Children's Clinic over the years.He had only one of the ninth pair. It's hard to know how much it affected him. It resulted in many, many abnormalities, said Reimer.Matthew was developmentally delayed and had multiple different kinds of seizures for which he took many medications. He also suffered from chronic lung problems, uncontrollable muscle contractions and a lot of neurological problems in addition to the seizures, Reimer said.He couldn't communicate except through his eyes. But you could tell when he was upset, he'd cry. When he was feeling good, he'd smile, she added.But he could do more than that, his family said while taking a break from funeral preparations last week.Before he got really, really sick, he was very precocious and fun-loving. He loved dogs, and cows, Anderson recalled.In fact, his first response to anyone or anything was to a cow, she said.He was 1 year old, it was at the Puyallup Fair. I was holding him in my arms, and a cow mooed behind us. He picked his head up, and said 'ooo'. He kept saying it the rest of the day, Patricia said.Matthew loved music more than anything, especially the soundtrack from the movie Men in Black. Other favorites included Mary Poppins, The Lion King and the Vegie Tales videos.Although he was legally blind, he had some vision and enjoyed the videos and watching sports on TV with his uncle, Anthony Robinson.He had favorite teams for all the sports, Robinson said. Baseball was the Yankees, basketball was the Philadelphia 76ers, and hockey was the New Jersey Devils.But his very favorite was the Kansas City Chiefs football team.We'd wear our Chiefs' jackets to watch the games, said Robinson.On the phone Patricia was talking to family friends about the funeral arrangements. This is a celebration of Matthew's life, so please don't dress all depressed, and be all morbid, she said.Matthew in fact was a snappy dresser, said Robinson. He loved to dress up. But his favorite outfit was baggy jeans and his Chiefs' jacket, he said.Despite his limitations, Matthew had a positive attitude, according his aunt, Maria Robinson, and others like Dr. Reimer and nurse Beth Augustin from the children's clinic. He was a trooper. He outlived his life expectancy. He fought hard and was well-loved and well cared for, Augustin said. Matthew was one tough cookie. He just kept going.He was well-known and loved at the clinic, Reimer said. He smiled for us, there were a lot of rewards as physicians ... he outlived what we thought (would be his life span) and did well a number of years. He brought joy to a lot of people's lives.Reimer and Augustin credit Anderson with Matthew's positive attitude, and her devotion to his care, and that of his younger brother Jaymz, 4, for that.She never gave up, and did everything she could to get the best care possible, said Reimer. She's a devoted mother, she dedicated her life to these kids. She's been wonderful.Anderson carried a double burden.Jaymz also was diagnosed with Trisomy 16, but with less severe results. He walks and communicates with sign language, and has a brighter prognosis, Anderson said.She found out after he was born that she's a carrier for the condition, and had a tubal ligation.But it's only her faith that got her through, Anderson said.Across the room from the end of Matthew's bed she had her own motivational wall - statements written in bright markers on 3-by-5 cards: Jesus can turn water into wine, but he can't turn your whining into anything and Faith is daring the eyes to go beyond what the eyes can see.If I didn't have faith and knew he was going to a better place, where he can run and do all the things he couldn't when he was Earth-bound, it would be unbearable, she said. How to helpFor Matthew, the fight is over. But for his mother, it continues as she attempts to come up with costs for his burial.Because of her faith and for personal reasons she prefers not to have Matthew cremated. And although a burial plot has been donated, Patricia Anderson still must come up with $3,000 for expenses.For those who would like to help, a bereavement fund has been set up at the Bank of America. Donations may be sent to Hospice of Kitsap County for the Matthew Wilkerson Fund at any Bank of America Branch. For more information, call Valerie Youngren of Hospice at 415-6911.More information about Trisomy 16 and its variants is available at the Disorders of Chromosome 16 Web site, www.DOC16. "

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