Death of 3-year-old spurs Ottawa school to hold auction to help pay medical bills

November 30, 2006

Death of 3-year-old spurs Ottawa school to hold auction to help pay medical bills

Thursday, November 30, 2006

During her short life, 3-year-old Ottawa resident Chloe Robinson developed a love for knock-knock jokes. She told them to anyone who would listen: doctors, nurses, family members. Her favorite:

Knock, knock.

Who’s there?


Boo who?

Don’t cry, it’s just a joke.

“We joked that she knew every knock-knock joke that you could ever know,” said her mother, Chrissy. “She was very smart for being locked up in the hospital room.”

Chloe died earlier this month at Children’s Mercy Hospital in Kansas City, Mo., after a lifelong battle with severe combined immunodeficiency, or SCID. This weekend, the Ottawa elementary school where Chloe’s father works is holding a silent auction fundraiser to help the family defray its medical costs, which haven’t yet been tallied.

“Anyone that’s seen pictures of Chloe or heard about her struggle … you couldn’t help but fall in love with her,” said Tori Wilson, a technology aide at Garfield Elementary School in Ottawa. “That same spirit is alive in Josh and Chrissy too … They’re part of us.”’

The auction will be from 9 a.m. to 4 p.m. Saturday at the elementary school. Items donated include autographed Kansas City Chiefs memorabilia and Kansas University men’s basketball tickets from coach Bill Self’s personal allotment, Wilson said.

If there’s any money left over from paying bills, the family plans to use it to help start a foundation in their daughter’s memory that will help other families in a similar situation.

“Rather than continue to ask why, we’re starting to decide what we can do to make sure that, even though she died early, her life was still meaningful,” said her father, Josh, a first-grade teacher.

Chloe was born in August 2003 in Lawrence. From birth, she had chronic gastrointestinal problems that were later attributed to her immune system.

She spent only a few weeks of her life in Ottawa. The rest of her time was spent under medical care in Kansas City, Nebraska, Boston, North Carolina and finally in Cincinnati, where she received a bone-marrow transplant early this year aimed at replacing T-cells in her body.

“On her transplant day, we threw a big tea party,” Josh Robinson said. “Since then, tea parties were her favorite thing to do.”

She had a way of making adults laugh, her parents said. They said that once, when she went into surgery, a hospital employee came out laughing because Chloe had been telling knock-knock jokes up until the point that she went under anesthesia.

After her bone-marrow transplant, her immune system improved. But in August of this year, her liver began to fail.

For the last weeks of her life, she left the hospital where she’d been staying in Cincinnati and returned to Children’s Mercy in Kansas City.

“We were basically sent back to Children’s Mercy with the understanding that her liver was going into failure, and we wanted her to be closer to home, wanted her to be able to spend time with her family,” Josh Robinson said. “I don’t think she knew necessarily that she was dying, but we got the sense that she knew something wasn’t right.”

Near the end, the decline in her health happened quickly. Even on her last day, when she developed internal bleeding, she had been sitting up in bed, painting, telling jokes and reading books with people, her father said. She died Nov. 11.

“Our greatest fear, knowing that she was dying, was that we were going to have to be the ones to decide to turn something off or stop something. There weren’t any choices. It was that quick,” Josh Robinson said. “She curled up with her mom and went to sleep.”

At her memorial service, the Robinsons had a photo of Chloe with room for visitors to write a knock-knock joke around the edges. They also gave away tea bags with a note that said, “With your next cup of tea, think of Chloe.”

The Robinsons said they’re grateful for the help they’ve received from the community.

“It’s been amazing,” Josh Robinson said.

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Duke takes strides in stem cell research

November 29, 2006

Duke takes strides in stem cell research

Jasten McGowan

Posted: 11/29/06

Since stem cell treatments first became a possibility in medicine during the 1960s, Duke University Medical Center researchers and physicians have played a major role in advancing their increasingly complex uses.

In recent years, DUMC has worked to create a number of unique methods to apply stem cells to the treatment of cancer and rare diseases.

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“Stem cells were once used as a last-ditch effort,” said Dr. Keith Sullivan, director of Duke’s Center for Cancer Outcomes and Research. “But, with Duke’s reputation for the treatment of rare and complex diseases, things are rapidly changing.”

Sullivan is lead investigator of the trial study Scleroderma: Cyclophosphamide or Transplantation, which treats patients suffering from severe forms of the rare skin disease commonly known as systemic sclerosis.

The trial compares stem cell treatment to high-dose drug treatment using cyclophosphamide, a chemotherapy agent used to treat chronic immunosuppression.

Sullivan’s SCOT trial approach, however, is merely one of many at Duke that applies variations to the traditional approach to stem cells, which once required perfect matches with varying results.

Dr. Rebecca Buckley, professor of allergy and immunology in Duke’s department of pediatrics, studies treatments for severe combined immunodeficiency disease, or “bubble boy disease,” which is caused by abnormal changes in the development of the T cells of the immune system.

Buckley has utilized methods that rid bone marrow of T cells, which are regenerated upon implantation.

“Unlike bone marrow [stem] cells requiring perfect matches, our approach doesn’t require a perfect match,” said Buckley, who has utilized stem cell transplants since the 1980s. “The 34 patients we’ve lost over the years were due to viral infection.”

Buckley said methods of “manipulating stem cells to avoid the hindrance of the perfect match” are prevalent among Duke researchers.

“We have one of the largest stem cell reserves in the nation,” Buckley said.

While scientists lobby for increased reserves of available stem cells-through increased blood donation in various forms-approaches to stem cell treatment for cancers and rare diseases are becoming increasingly complex.

Joanne Kurtzberg, director of the Pediatric Bone Marrow and Stem Cell Transplant Program and the Carolinas Cord Blood Bank at Duke, said the use of cord blood stem cells presents growing opportunities for children and some adults suffering from various cancer types and children with rare immune diseases.

Cord blood cells present alternatives to what were once “dead ends” in treatment options for some conditions, she said.

“For patients lacking sufficient bone marrow matches, this is their only choice,” Kurtzberg said. Stem cells from cord blood are currently used to treat patients with cancers, certain genetic blood disorders and metabolic diseases.

Kurtzberg said that while it is likely that many types of stem cells will be used therapeutically over the next few decades, it is important to conduct research to determine the optimal ways to utilize them as therapeutic agents.

“While there are limited options for any one condition, approaches are changing,” she said.

Stories of Lives Saved by Cord Blood

November 26, 2006

November 26, 2006
Stories of Lives Saved by Cord Blood – Larry Mitchell

The advancements of medicine and technology are saving lives each year that would otherwise be lost to disease or medical disorder. Each year, more and more children are living through potentially terminal diseases and battling their way back to health with help of cord blood. Cord blood is found within the umbilical cord and preserved upon the birth of the child. Since the blood contains stem cells, numerous diseases and disorders are successfully treated and even cured through transplants. Parents today are choosing to either bank cord blood for future use or donate their newborn’s cord blood so that ill children can take advantage of this life-saving blood.

An inspiring case is that of siblings Ashley and Kelvin J. of Maryland. These two children were both born with severe combined immunodeficiency syndrome that is usually terminal, since the body’s immune system cannot fend off the germs that would otherwise be harmless to a healthy body. Projected life span for children diagnosed with severe combined immunodeficiency syndrome (SCIDS) is approximately six months; however, both Ashley and Kelvin received a transplant of cord blood from anonymous donors whose cord blood was donated to public blood banks……

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NIH Launches ‘Health Info Rx Program’ On Newborn Screening And Related Genetic Disorders

November 26, 2006

NIH Launches ‘Health Info Rx Program’ On Newborn Screening And Related Genetic Disorders
Article Date: 26 Nov 2006 – 2:00 PST

After a doctor sees a patient, he or she often prescribes medications. But what if such a doctor also wants to direct a patient to up-to-date, reliable, consumer-friendly information about a genetic condition, or an explanation of the basics of genetic science? Under a new program launched today, practitioners are being encouraged to refer their patients to Genetics Home Reference, a free, patient-friendly Web site of the National Institutes of Health (NIH), at

Under this program, doctors can request free “Information Rx” pads, which will enable them to write “prescriptions,” pointing patients to the Genetics Home Reference site and to the wealth of information it contains. Obstetricians can direct their patients to the site’s explanation of newborn screening, so expectant mothers will better understand why this testing will be important for their baby.

Pediatricians and family physicians who see new moms and dads often provide good advice on newborn or child care concerns. If there happens to be a problem detected in a screening, where should this doctor direct the concerned parents for reliable, easy-to-read information at a stressful time? NIH’s Genetics Home Reference can be an invaluable resource.

All states screen newborns for certain genetic disorders. These conditions are usually not apparent in the newborn, but can cause physical problems, mental retardation and, in some cases, death.

Micki Gartzke, a patient advocate from Shorewood, Wisconsin, lost her 13-month-old daughter, LeA Marie, to a rare genetic disorder, Krabbe disease, in 1987. “As a parent, of course you want every possible piece of information when you find out your child is sick. The Internet back then was in its infancy –resources were scattered and I did a lot of hunting and pecking to find things that would help us. It’s so gratifying to see a resource like Genetics Home Reference, which has collected and organized a wealth of helpful materials into a one-stop shopping experience. I know that it is of great relief to parents I work with through Hunter’s Hope, the foundation to help families coping with Krabbe disease, and parents around the country.”

Fortunately, most babies receive a clean bill of health when tested. When test results show that a baby has a health defect, however, early diagnosis and treatment can make the difference between lifelong disabilities and optimal development.

Four of the nation’s most respected medical associations, with a combined membership of over 200,000, have teamed with two NIH institutes on this groundbreaking initiative. The National Library of Medicine (NLM), the world’s largest medical library, and the National Institute of Child Health and Human Development (NICHD), the research arm of NIH dedicated to ensuring that every child in the U.S. is born healthy and grows up free from disease and disability, have entered into partnerships with the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), the American College of Obstetricians and Gynecologists (ACOG) and the American College of Medical Genetics (ACMG) to encourage physicians to point patients to first-rate online health information in NLM’s Genetics Home Reference database.

“Part of a physician’s job is to explain illnesses, diagnoses and treatments to their patients,” says Donald A.B. Lindberg, MD, Director of the National Library of Medicine. “NLM’s Genetics Home Reference provides authoritative, user-friendly, and commercial-free information that doctors can use to supplement information provided in the office or clinic. We think it saves time and improves doctors’ communications with patients, in addition to its obvious value in helping keep babies healthy.”

“Physicians have always known that an informed patient who takes an active role is a ‘better’ patient,” notes Duane Alexander, MD, Director of the National Institute of Child Health and Hunan Development. “We believe that both patients and their doctors will welcome this additional tool — good medical information — in their continuing efforts to provide good health care, for newborns and for people of all ages.”


Genetics Home Reference includes over 500 topics on genetic conditions and related genes. The site features a richly illustrated tutorial that explains the basics of genetics, from the cellular level on up, and a glossary of genetics terms. The site is regularly updated by scientific staff and reviewed by external experts.

A similar Information Rx Project, pointing patients to NLM’s MedlinePlus database (, was launched in 2003. That program has been well received by doctors and their patients nationwide, helping doctors direct patients to NLM’s MedlinePlus database, with information on over 700 health topics and many other resources.

Located in Bethesda, Maryland, the National Library of Medicine is the world’s largest library of the health sciences. For more information, visit the Web site at

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U. S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical, and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit

Contact: Robert Mehnert
NIH/National Library of Medicine

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Cystic Fibrosis Added to Newborn Screening Program

November 23, 2006

Cystic Fibrosis Added to Newborn Screening Program
Josh Pringle
Thursday, November 23, 2006

Ontario is adding cystic fibrosis to the list of screening tests for new babies under the Newborn Screening Program.

Starting late next year, newborn babies in Ontario will be tested for cystic fibrosis in addition to 27 other diseases.

Health Minister George Smitherman says early detection of the disease in newborns will help ensure they receive proper care as soon as possible.

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Proposed Rule Changes Aim To Strengthen Newborn Screening In Minnesota

November 22, 2006

Proposed Rule Changes Aim To Strengthen Newborn Screening In Minnesota

November 21, 2006 — The Minnesota Department of Health (MDH) is proposing changes to rules affecting the screening of all newborn infants in the state for an array of congenital and inherited diseases that can often be life-threatening or debilitating. The changes would bring the rules up-to-date with recent changes in newborn screening laws made by the Legislature and with changes in the screening process as a result of scientific and technological advances. They also would further clarify the roles of MDH, hospitals and health care providers.

The department published its notice of intent to adopt changes in the newborn screening rules in the Nov. 20, 2006 State Register. The public has until Friday, Dec. 29, 2006 to comment on the proposed changes. If MDH receives 25 or more requests for a hearing, a public hearing on the proposed rules will be held on Tuesday, Jan. 23, 2007 at 9 a.m. in the Freeman Building of the Minnesota Department of Health, 625 Robert Street N, St. Paul, Minnesota 55155.

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Close Up: The Boy in the Bubble

November 16, 2006

Close Up: The Boy in the Bubble

James Thompson Richards

Nov 16, 2006

James Thompson Richards looks like any normal 13-year-old boy.

But he is not.

James was born with Severe Combined Immune Deficiency Syndrome – SCIDS. With no immune system he has spent most of his life in sanitised isolation.

“Just say I get the flu or I catch flu from someone in my class, I get it like four times as bad. But I feel like i’ve got the flu every day. Its’ just like eating, It’s just part of my life,” James told Close Up.

Only around one in 50,000 people have this condition.

His first years were spent in isolation at Auckland’s Starship Hospital, then later, alone in a sanitised room at home.

“When I was little I couldn’t cuddle…or see my brothers, i’d just see them at the door they couldn’t come in unless they wore gloves and masks.”

James had a bone marrow transplant in Australia when he was five, but that was unsuccessful. And doctors say chemotherapy is out of the question because of his failing health, which includes chronic lung disease.

“When the professors told me in Sydney that there was nothing more they could do for him that he’s never going to get better, that made me the decision at that time that I was going to tell James the truth about everything,” says James’ mum Jean.

James says he takes things day by day, which means alternating visits to Taranaki and Starship Hospitals every three months, where he stays for two week stints. Then there is the immunoglobulin antibiotics he injects into his belly at home, which he has done every second day, for the past six years.

Long term there is one long shot.

While researching James’ condition on the internet, the family read about 11 boys in Europe with his condition, who were apparently cured using stem cell therapy.

But for James and his family, heading overseas is a huge and costly gamble.

“He’s not a good candidate for it because his lungs have deteriorated too much…but these boys had a simialr if not worse prognosis,” says James’ dad Garth.

Taranaki Base Hospital agreed to talk to Close Up about James’ condition, but pulled out of the interview after Jean and Garth said they also wanted to talk about stem cell therapy. It said it wasn’t policy to talk about that subject.

Starship Hospital wouldn’t talk about James’ case specifically, but sent Close Up a statement about the use of stem cell therapy as treatment for people with severe combined immuno deficiency syndrome:

“A bone marrow transplant is always the preferred option for SCIDS patients. Gene therapy can help some. But because there’s only small number of people with the condition in New Zealand, it’s not available here.”

While stem cell therapy overseas is a risky option for James – and a hugely expensive one for his family – the mere hope it could give him a better life means they are prepared to try to get him there.

They have been in touch with doctors at Great Ormond Street Hospital in England and are preparing a fundraiser to get him there.

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