Tuesday, May 27, 2008

McMinnville woman with Down syndrome 'beats the odds' at 73

McMinnville woman with Down syndrome 'beats the odds' at 73

Staff Writer

When Mary Perry was born with Down syndrome in the 1930s, people with the disability typically didn't live past age 9.

At 73, the McMinnville woman has managed to outlive all but one of her eightbrothers and sisters. She is one of the oldest living people with Down syndrome.

"She beat the odds," said Dr. Karen Summar, a developmental pediatrician at Vanderbilt children's hospital. "It's incredible."

The 2007 Guinness Book of World Records lists the oldest living woman with Down syndrome as Nancy Siddoway, of Utah, who was born on Aug. 18, 1937, and the oldest living man with Down syndrome as Keith Roberts, who was born in South Africa on June 6, 1953. Perry was born on June 9, 1934.

Dale Perry attributes his aunt's old age to her strong will.

The way her relatives tell it, in Mary's youth she could run "like a jackrabbit." She cleaned house. She "took care of her own bathing."

All of that changed for Mary Perry in adulthood, when her mother fell and broke her hip. From that day on, "Mary couldn't walk no more," said Jackie Perry, who met Mary Perry in 1956and went on to marry her brother.

The doctors never could find anything wrong with her legs, and she has spent the rest of her life in a wheelchair.

"It was one of those mind things," Jackie Perry said. "After she quit walking, she would say, 'I'm my momma's baby girl.' "

Dale Perry said his aunt "willed herself" to never walk again and he believes she tapped into that same strong will to live as long as she has.

Life span jumps to 55

While Perry's longevity is extraordinary, medical advances that have occurred since the 1980s have dramatically increased the life span of people with Down syndrome.

"In the future, it won't be so remarkable," Summar said. "This will become more routine, instead of the exception."

Down syndrome, caused by a chromosomal abnormality, causesmental disabilitiesand a host of medical conditions, including heart and respiratory problems. When Mary Perry was born, medical treatment either didn't exist or was not offered to this population.

Today, many of the medical conditions associated with Down syndrome can be treated. As a result, people with Down syndrome have an average life span of about 55, compared with roughly 25 in the 1980s.

"When Mary was born, they didn't have effective treatment," said Dr. Kuang-Tzu Lin, a physician specialist at Clover Bottom Developmental Center, a state-run home for people with disabilities in Nashville. "They were not too eager to pursue available treatment because there was no cure. People's concept is much different now."

Summar said the increasing life span has huge policy implications.

"There are going to be more and more people with Down syndrome living to this ripe old age," she said. "They will outlive their parents. Who will take care of them when their parents pass on? We've got to be thinking of what's ahead."

Treated like her siblings

In the 1930s, it was the standard for babies with mental or physical disabilities to be hidden away in institutions, but that wasn't the case with Mary Perry.

More than medical advances, Summar believes the care and love she's received from her family have helped her live so long.

"Being raised at home, she had proper nutrition," Summar said. "She wasn't in the crowded environment of an institution. Contagious illnesses would sweep through those places."

Her relatives say she was dearly loved and was treated just like all her other siblings growing up on the farm. But Mary Perry's mother experienced decades ago what's just becoming commonplace today.

After she fell and broke her hip, Mary Perry's elderly mother, Delia, could no longer physically take care of her 37-year-old daughter. So, Mary Perry went to live at Clover Bottom.

Renee McCormick, Mary Perry's niece, said she remembers her coming to visit the family when she was little.

"She touched my heart years ago," Renee McCormick said. "She didn't want to leave her mother."

Being a small child herself, McCormick could relate to the feeling. After a while, Mary Perry got used to her new surroundings and didn't want to go back home.

A lovely, lively lady

At Clover Bottom, Mary Perry came to be known by employees as the "Queen of the Clinch Home," after the dorm where she lived. She liked to spend her days relaxing on a recliner and looking at pictures in fashion magazines, Lin said.

"She is a very lovely lady," Lin said. "Always smiles. Always says, 'I love you.' "

But she had a wild side, too. "She was just constantly flying around in that wheelchair," Dale Perry said. "Something sparkled with her."

Mary Perry has slowed down of late. She suffered several mini-strokes and though she's conscious and moving her arms, she's not talking, Lin said. Last week, Mary Perry moved to a nursing home in McMinnville. She was reunited with her only living sibling, a sister, who also lives in the nursing home.

"We don't know how much time we have with her," Dale Perry said. "It could be a week. It could be six weeks."

But Dale Perry said he wouldn't put it past his aunt to surprise them all.


Wednesday, May 21, 2008

Sorry haven't been around too much . . .

Sorry I haven't posted more on here. We have been very busy lately with many things right now. We are really trying to finish writing the book and we have also been busy dealing with moving (we will be moving to Oklahoma the end of Summer, Lord willing).

More later . . .
~ Qadoshyah

In-Utero Vitamin B6 Deficiency

I just happened to be looking through PubMed (yep, something I like to do every few months ;)) and ran across this abstract about a Vit. B6 deficiency in-utero. Thought it was interesting.


Pyridoxine-related metabolite concentrations in normal and Down syndrome amniotic fluid.

Baggot PJ, Eliseo AJ, DeNicola NG, Kalamarides JA, Shoemaker JD.

Hollywood Presbyterian Medical Center, Los Angeles, CA, USA. pjbaggot@hotmail.com

INTRODUCTION: Some studies of children with Down syndrome have found mild abnormalities in the metabolism of pyridoxine (vitamin B(6)); therefore the present question is whether such abnormalities might also be present in the amniotic fluid of fetuses with Down syndrome. MATERIALS AND METHODS: Archived specimens of amniotic fluid were obtained from chromosomally normal and from fetuses with Down syndrome. Gas chromatography/mass spectrometry quantitized B-related metabolites, including oxalate, xanthurenate, kynurenine and 4-pyridoxic acid. RESULTS: Oxalate, a marker of pyridoxine deficiency, was elevated in the amniotic fluid of fetuses with Down syndrome. This result was statistically significant. The other marker results were not statistically significant. CONCLUSION: A marker of pyridoxine deficiency, oxalate is elevated in the amniotic fluid of fetuses with Down syndrome. These results in amniotic fluid are consistent with previous studies done in the urine of young children. (c) 2008 S. Karger AG, Basel.

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