Boy in bubble' lands in Toronto

Boy in bubble' lands in Toronto

Emma Poole, Calgary Herald
Published: Tuesday, February 27, 2007

Following a four-hour flight to Ontario, Evan Pogubila -- Calgary's "boy in the bubble" -- has settled into his isolation room at Toronto's Hospital for Sick Children.

The nine-month-old boy, who suffers from severe combined immunodeficiency disease, was medevaced 3,400 kilometres east early Monday in preparation for a special bone marrow transplant.

"It went really, really well. They were really well organized," Evan's mom, Melanie Pogubila, said after arriving in Toronto.

Evan was transferred on a private air ambulance in a sealed plastic enclosure to keep out germs.

For the first month in Toronto, Evan will undergo chemotherapy to ready his system for the transplant. Doctors have found a perfect bone marrow match for Evan. Neither Melanie nor her husband Frank were matches for the boy.

Since being diagnosed with the rare illness in November, Evan has remained inside an isolation room at Alberta Children's Hospital.

Any contact with the public -- including his twin sister, Jordan -- could compromise what little of his immune system is left.

The transplant is Evan's only chance of living a normal life outside of a hospital. Toronto is the only place in Canada where the procedure is done.

Melanie's parents have also moved to Toronto.

The family, who plan to remain in the city for up to a year, has secured a two-bedroom apartment near the hospital.

Frank Pogubila will fly back and forth from Calgary.

While the Alberta government will pay for Evan's medical costs, estimated at $150,000, the family is absorbing the bulk of the other expenses.

epoole@theherald.canwest.com
© The Calgary Herald 2007

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Specialists Treat Primary Immunodeficiency Diseases More Aggressively Than Other Clinicians: Presented at AAAAI

Specialists Treat Primary Immunodeficiency Diseases More Aggressively Than Other Clinicians: Presented at AAAAI

By Bryan DeBusk

SAN DIEGO, CA -- February 26, 2007 -- A survey of academy members suggests that specialists in primary immunodeficiency diseases (PID) prescribe more aggressive therapies than their non-expert colleagues, according to findings presented here at the 2007 American Academy of Asthma, Allergy, and Immunology (AAAAI) annual meeting.

"The objectives of this survey were to identify clinical practice as applied to primary immunodeficiency disease patients, especially where there is little existing clinical evidence, to identify expert practices, and identify questions to fuel future clinical research in PID," said Jordan Orange, MD, PhD, assistant professor of paediatrics, division of allergy and immunology, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States.

In a presentation on February 24th, Dr. Orange related the results of a web-based survey of AAAAI members on behalf of the AAAAI-PID committee and the Immune Deficiency Foundation. of 3,000 members invited to participate in the survey, 408 responded.

While 80% of respondents reported treating patients with PID, the majority reported that PID patients comprised less than 10% of their practices. The committee labelled physicians as PID experts if more than 10% of their patients had a PID. Both non-experts and experts reported seeing about 100 patients per week, and non-experts tended to see patients in solo practice while experts tended to operate in a hospital outpatient setting.

The survey responses indicated a number of differences in the way experts and non-experts treat patients with PID. Dr. Orange noted that while 87% of physicians with PID patients prescribe intravenous (IV) immunoglobulin (IG) therapy to prevent infection, experts are 6 times more likely to prescribe this therapy for their PID patients than non-experts.

Both experts and non-experts prescribed IVIG for all patients with X-linked agammaglobulinemia (XLA), but prescription patterns for other diseases were less consistent. Experts were more likely to prescribe IVIG for patients with ataxia telangiectasia, hyper-IgM syndrome, severe combined immunodeficiency, Wiskott-Aldrich syndrome, and X-linked lymphoproliferation.

Additionally, 63% of experts said they aim for trough IgG levels >600mg/dL while non-experts were more likely to aim for lower levels. No difference in the therapy schedule was reported between experts and non-experts, and 87.1% of respondents said they prescribe IVIG every 4 weeks while 10.6% prescribe every 3 weeks.

Prophylactic antibiotics are prescribed by 55% of respondents for at least some patients, and there was a trend toward experts using them more frequently, while some respondents prescribe them in addition to IVIG.

Reflecting on the importance of the survey results, Dr. Orange said, "I think it is important to have rigorous standards upon which the use of IVIG is based for PID …. Hopefully these data can be used to fuel pertinent questions."


[Presentation title: Specialist Physician Perspectives on Primary Immunodeficiency Diseases: A 2006 Survey of the AAAAI Membership. Abstract 279]

Linkback URL: http://www.docguide.com/news/content.nsf/news/852571020057CCF68525728E00545185

MyFox WGHP | Family Keeps Child in Virtual Bubble

MyFox WGHP | Family Keeps Child in Virtual Bubble

There's a great video here of a mother and child, living in reverse isolation, while waiting for the SCID baby's transplanted cells to begin to work. (click on the title of this article to see it.)

I don't know how long the link will work, but I hope the news service keeps it up for quite a while.

There's a new blog to go along with the video for comments.

http://community.myfoxwghp.com/blogs/bubbleboymom

Bone marrow donor found for Alberta 'bubble boy'

Bone marrow donor found for Alberta 'bubble boy'

Updated Mon. Feb. 19 2007 9:52 AM ET

CTV.ca News Staff

The family of a nine-month-old "bubble boy," who has spent months living in isolation in an Alberta hospital, has received the news they've been waiting for. A bone marrow donor has been found who can help their son.

Evan Pogubila, has severe combined immunodeficiency disease, one of only a handful of children in Canada with the ailment. Caused by a genetic defect, the condition is the rarest, and deadliest, of the primary immunodeficiencies.

Children with the disease lack lymphocytes, the white blood cells that fight infection. Any contact with anyone with the slightest illness could compromise what little of his immune system is left. Even the common cold could be devastating.

The chances of finding an exact match for Evan were less than 1 in 3 million, making the connection even more remarkable.

His father, Fred Pogubila, says the family felt a wave of emotion upon learning of the news.

"Shock. Disbelief. Bewilderment. Excitement -- the whole gamut of emotions came through. We're just happy that we're now in the game," he told Canada AM.

Evan has been living in solitude from the public for more than three months -- separated even from his twin sister Jordan, who doesn't have the condition.

"That's probably the hardest part of this right now," says Pogubila. "We bring her in but they cannot have any contact. So we have a window that they beat on the glass against each other. Whether or not there's a connection, we'd like to think this is. It's fun to see them interact even if it is through a pane of glass."

Evan's only chance of leaving the hospital room he's called home for more than half his life was a bone marrow transplant.

Last Thursday, Evan's family received word that a bone marrow match had been found and the donor was willing to undergo the procedure to help Evan.

The transplant can only be performed at Sick Kids Hospital in Toronto. So next week, Evan will fly to Toronto on a medical air ambulance.

Pogubila says while the family is excited and grateful, they remain nervous about the road ahead. Evan will have to undergo chemotherapy to prepare his system for the transplant. And there's no guarantee his body will accept the donor's marrow.

"There's a lot of work that goes on. The fact that we found 'the magic bullet' we have to put it into action right now. It is a long process that's going to take place and the success rate, it's not guaranteed that he has the perfect match, that it'll engraft correctly to his body."

Pogubila says he's learned a lot from this experience, particularly how important it is to donate blood.

"It's unfortunate that it's taken me to be put in this situation to step forward and donate. But it's the one thing that everyone has and the one thing that everyone can give. It doesn't discriminate against age, colour race, economic status of some sort. It's one thing that we can all give and we can all share.

"And basically, I'd like to give back to what we've been given from the community."

Linkback URL: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20070219/
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Association of Public Health Laboratories Applauds Introduction of Newborn Screening Saves Lives Act

Association of Public Health Laboratories Applauds Introduction of Newborn Screening Saves Lives Act

WASHINGTON, Feb. 15 /PRNewswire-USNewswire/ -- The Association of Public Health Laboratories (APHL) commends Senators Chris Dodd (D-CT) and Orrin Hatch (R-UT) for their introduction of legislation to provide increased parent and health care provider education, improve follow-up care and enable states to improve their newborn screening programs. The Newborn Screening Saves Lives Act of 2007 represents a significant commitment to improving the health of children by assuring that testing will continue to occur with the greatest level of accuracy and that those children with life threatening and debilitating disorders will receive prompt and effective treatment.

"The nation's public health laboratories have been at the vanguard of newborn screening since its inception in 1965," said Katherine Kelley, DrPH, director of Connecticut's public health laboratory. "I'm thrilled that Senator Dodd has again introduced legislation that will allow public
health laboratories to continue to provide the highly-accurate testing results -- results that enable health care providers to immediately begin treatments that save and improve the lives of children -- as technological advances broaden the number of disorders that can be detected. I urge all members of the Senate to cosponsor Newborn Screening Saves Lives Act of 2007."

Public health laboratories conduct newborn screening tests on 97 percent of the babies born in the US -- tests that have long been recognized as an essential and effective preventive public health service that identifies thousands of babies each year who are born with a genetic or metabolic disorder. Laboratories and parents must be confident that tests results are accurate and that disorders are not missed.

"This important piece of legislation is needed to ensure that all babies born in the US have an equal chance for a healthy start to life," said William Becker, DO, MPH, chair of the APHL Newborn Screening and Genetics in Public Health Committee. "It is especially significant that the new bill directs the Secretary of Health and Human Services to develop a national contingency plan for newborn screening so we can build upon the experiences learned after Hurricane Katrina and that it continues to provide critical monies for assuring the quality of all newborn screening laboratory testing."

The funding provided in the bill for the Centers for Disease Control and Prevention (CDC) will enable CDC to utilize state-of-the-art science to address pressing newborn screening issues that are of public health concern and:

-- Develop new screening methods for specific disorders, including asthma, autism, diabetes, severe combined immune deficiency (SCID) and metabolic storage diseases such as mucopolysaccharidoses and adrenoleukodystrophy

-- Adapt innovative technologies for screening and quality assurance

-- Transfer appropriate screening technologies to state public health laboratories

-- Assist states in conducting pilot studies related to new screening tests for newborns that would identify babies with disorders that are not part of the current panel of tests

-- Develop systems for new screening tests to monitor the quality of testing methods in all laboratories

-- Upgrade online data-reporting site to accommodate expanding the number of newborn screening tests that state laboratories conduct

-- Develop DNA methods and controls for genetic measurements that will be used in the future to detect disorders CDC's Environmental Health Laboratory is the only comprehensive source
in the world for ensuring the accuracy of newborn screening tests, and the nation's public health laboratories depend on it for the success of their newborn screening operations.

The Association of Public Health Laboratories works with members to strengthen laboratories serving the public's health. By promoting effective programs and public policy, APHL strives to provide public health laboratories with the resources to protect the health of US residents and
to prevent and control disease globally.

Contact: Jody DeVoll, Director of Communications and Membership, 240.485.2753,
jody.devoll@aphl.org


SOURCE Association of Public Health Laboratories

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Boy in bubble inspires donors

Boy in bubble inspires donors

Emma Poole, Calgary Herald
Published: Monday, February 12, 2007
Article tools

Evan Pogubila doesn't know it yet, but he has inspired dozens of Calgarians to give a little bit of themselves to help save a life.

In honour of the eight-month-old, who has lived in isolation at the Alberta Children's Hospital since November, friends and family have signed up to donate blood tonight. Others have also agreed to become bone marrow donors.

"It's fantastic," said Evan's mom, Melanie Pogubila.

More Body & Health news

As the only child in Western Canada with severe combined immunodeficiency disease -- a condition brought to the public eye by a 1976 John Travolta movie, The Boy in the Plastic Bubble -- Evan has been living in solitude from the public for more than three months.

Caused by a genetic defect, the condition is the rarest, and deadliest, of the primary immunodeficiencies.

Children with the disease lack lymphocytes, the white blood cells that the body uses to fight infection.

For Evan, any contact with the public -- including his twin sister, Jordan -- could compromise what little of his immune system is left.

Transplantation is the only chance Evan has of beating the disease and leaving the hospital. As he waits, Evan regularly receives blood transfusions.

Melanie Pogubila is a longtime donor, while her husband, Frank, gave blood last week for the first time.

"Just through our experience with Evan, (Frank) realized that if someone is donating to Evan, he should be able to reciprocate," she said.

While no one in Evan's immediate family is a bone marrow match for the little boy, the Pogubilas hope their donation and that of their friends will help others.

The group will gather at the Canadian Blood Services office in downtown Calgary tonight for a donor clinic in honour of Evan.

More information on donating blood can be found at www.blood.ca.

epoole@theherald.canwest.com
© The Calgary Herald 2007

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Human disease clues riding on horse genome research

Human disease clues riding on horse genome research
By Bryn Nelson
Newsday
Associated Press
Scientists have found more than 80 genetically linked diseases that are common to both horses and humans.

Scientists have assembled the genetic blueprint of a thoroughbred mare, a rough draft of its entire DNA sequence that may point the way toward a better understanding of equine evolution, physiology and the dozens of diseases found in both horses and humans.

Claire Wade, a lead member of the sequencing team and a senior research scientist at the Broad Institute in Cambridge, Mass., said the assembled genome still contains sizable gaps and has yet to be thoroughly analyzed. Nevertheless, she and other researchers said its estimated 2.7 billion units, or letters, of DNA should provide a wealth of new information.

“It takes us from the relative Dark Ages of genetics to the relative forefront,” said Dr. Doug Antczak, a professor of equine medicine at Cornell University in Ithaca, N.Y.

Scientists isolated the DNA from Twilight, a mare housed at Cornell and bred to help Antczak understand how horse fetuses and placentas can successfully evade or defend against the mother’s immune system. Far beyond his own studies, however, Antczak said Twilight’s DNA may lay the foundation for research efforts around the world.

Like humans, for example, horses are susceptible to the West Nile virus and must contend with allergies and arthritis. Some suffer from neurological or muscular disorders. And Arabian horses can inherit a form of severe combined immunodeficiency, more commonly called “bubble boy” disease.

So far, researchers have found more than 80 genetically linked diseases common to both horses and humans.

Wade said racing horses may grant a better understanding of physiology, perhaps allowing veterinarians to help them and other breeds more easily recover from injuries. And because, like us, horses have been preyed upon by bears, wolves and predatory cats, they may teach us a thing or two about the biological basis of caution.

“Horses do get anxious,” she said. “Because they’re prey animals, they do have to be very aware.”

The $15 million sequencing effort, funded by the National Human Genome Research Institute, suggests we share about 85 percent of our genetic information with horses. Like us, they are thought to possess fewer than 20,000 genes, although their 64 chromosomes – half inherited from each parent – easily bests our 46.

The new genome may also allow researchers to peer into the evolutionary past of a mammalian group that includes tapirs, rhinoceroses and zebras.

linkback url: http://www.fortwayne.com/mld/journalgazette/living/
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A few good viruses

A few good viruses
7 February 2007
by Hamish Clarke
Cosmos Online

Viruses generally get a bad rap, but in laboratories around the world, these miniscule hijackers are themselves being hijacked to treat some of humanity’s most feared diseases.

As far as words with negative connotations go, it's hard to top 'virus'. AIDS, bird flu, cholera, Dengue fever, Ebola - and that's just the first five letters of the alphabet. And when Agent Smith tells Neo in The Matrix that he considers the human race a virus, it's widely understood that he's not paying a compliment.

But for a rising number of scientists, viruses aren't sinister at all. Instead, they are at the forefront of the latest advances in genetic technology, bringing hope to those with previously incurable diseases.

Hitchhikers, hijackers & hosts
Defining viruses is notoriously difficult. Though viruses are a subject firmly rooted in biology, ask a biologist for an explanation of what they are and you're likely to hear some emphatically non-biological descriptives like 'particle', 'entity' and 'fragment'.

Like some bacteria, and even 'higher' eukaryotic organisms such as fungi, viruses are entirely dependent on a host organism for survival. But unlike the others, viruses are not generally afforded 'living' status because they consist of little more than DNA or RNA wrapped in a shell, without the tools for reproducing themselves or turning their genetic information into useful proteins.

When a virus infects a host cell, the cell becomes its workshop. It hijacks the machinery of the cell, turning it from its usual purposes to the sole task of replicating the virus's genetic material and protein coat. So effectively does the virus take over the cell - so many copies of the virus does it produce - that the cell eventually suicides, bursting under the pressure of the viral progeny (also called bicentuplets), setting them free to infect other cells and continue the cycle.

But there is another path the virus can take, one that has spawned a research love affair with viruses. Rather than immediately hijacking the cell for its own reproductive ends, sometimes a virus will insert its genes into the host's genome, ensuring their safety and biding its time until conditions are right for replication. Often this is not harmful to the host cell, and during this period of dormancy the viral DNA gets replicated along with the rest of genome when the cell divides. Eventually, a trigger may activate the viral genes, which usurp control of the cell's machinery and send off daughter viruses to infect other cells.

Tool thief or tool?
In 1952, Martha Chase and Alfred Hershey used viruses to help establish that DNA, rather than protein, forms the basis of heredity. Cheap, quick to produce, and easy to modify, a core group of viruses has filled out the toolboxes of many a biologist ever since.

Their ability to entwine themselves with the host's genome has made viruses the darlings of the field of gene therapy. The once outlandish scenario of going into a person's cells and correcting genetic 'typos' is now an earnest aim of researchers, who hope intentional viral infections will one day help sufferers of diseases such as Parkinson's and Severe Combined Immunodeficiency (SCID), also known as 'bubble boy syndrome', a mutation in the genome that prevents the body's immune system from functioning.

Researchers plan to 'hijack the hijackers' - swapping the virus' harmful genes for a corrected version of the patient's defective genes and using the virus' unique abilities to insert the gene into patient's genome. In reality, the procedure is fraught with difficulties, not least getting the right amount of gene in the right location without side effects.

Pavel Osten from Northwestern University in Chicago, Illinois, recently co-authored a paper on the use of viruses as DNA delivery systems, or vectors. "In my view, it is most likely that this work [gene therapy] will become a mainstream treatment of some of the devastating brain disorders for which there is currently no treatment," he wrote.

But how would you feel about being injected with a virus to cure a disease? According to Osten, the risks are low and decreasing. "The viral vectors … are in most cases stripped down to the most basic elements that are required for gene delivery, and thus in no possible way pose any risk with respect to the original disease."

Viruses don't attack only animal cells, however. The vast majority of viruses actually target bacteria, including the bacteria that infect humans; they are called bacteriophages, or phages for short (from the Greek phagein, to consume). "For years researchers have been looking at using this targeted bacterial killing as an alternative to antibiotics," says Jason Clark from Moredun Research Institute in Scotland. While this might seem a bit like inviting in the barbarians, it's also sound science; in August of last year, the U.S. Food and Drug Administration (FDA) approved a bacteriophage food spray designed to reduce the amount of illness-causing bacteria on ready-to-eat meals.

It's a virus' world
By probing their workings and exploiting their functions in laboratories around the world, scientists have gone a long way toward demystifying viruses. But recent revelations about the extent of viral diversity could radically shift our perceptions of them again.

The advent of a range of DNA-sequencing technologies has allowed microbiologists to move beyond the constraints of studying only what they can culture in the lab, and glimpse what exists 'out there' - in the soil, in the sea and in our guts. And the results have been eye opening. According to some estimates, the total number of viruses exceeds the total number of cells in every other life form - including bacteria - by a factor of ten. "The total biomass and biodiversity of viruses is truly staggering," says microbiologist Nick Coleman, from the University of Sydney in Australia.

So what are all these viruses doing? Should we be avoiding contact with other people and frequently sterilising ourselves? According to Coleman, viruses actually do a lot to control other parasites. "The implication [of microbial biodiversity studies] is that most, if not all, larger microbes are subject to viral parasitism, and that viruses might be crucial in controlling the populations of other microbes."

Forest Rohwer of San Diego State University in southern California has conducted several landmark studies of marine microbial diversity. Rohwer has seen a change in attitudes towards viruses over the years. "Scientists have always recognized the importance of viruses, but recently it has become clearer that viruses are an integral part of every ecosystem and can't be ignored when we try to understand how life on Earth works," he says. "We usually only hear about viruses in the context of human disease. But most viruses are actually not harmful, and in fact have played an important part in evolution and in maintaining healthy ecosystems."

Andrew Holmes, a microbiologist from the University of Sydney, thinks that people should know that "viruses are everywhere and do not instantly equal 'bad'… [they] have the potential to cause very rapid biological change through epidemic disease, but that is exceedingly rare," he says. "Vigilance is important but panic is unwarranted." Holmes points out that this same process is an important part of correcting imbalances that occur in nature. For example, one mechanism by which algal blooms - explosions of algae that choke sea life and disrupt food chains - break down is viral disease. As Holmes puts it, "such viruses are the means by which the ecosystem corrects itself."

According to Rohwer, when you multiply the number of viruses out there by the billions of years they've been around, their probable influence over evolution is huge. "They are able to move genetic information between different hosts, but we still do not fully understand how this has influenced, and continues to influence, the evolution of new species."

So the next time your nose starts to run or you feel a tickle in your throat, spare a thought for your uninvited guest … and the role you play as gracious host to a galaxy of hitchhikers.

linkback url: http://www.cosmosmagazine.com/node/1024

Calgary's 'boy in bubble' awaiting surgery

Calgary's 'boy in bubble' awaiting surgery
Baby Evan needs a bone marrow transplant done only in Toronto

Melanie Pogubila must don sterile clothing before holding her eight-month-old twin son, Evan, who lives in a special germ-free room at the Alberta Children's Hospital. Evan is the only child in Western Canada with a rare immune system disease.

Melanie Pogubila must don sterile clothing before holding her eight-month-old twin son, Evan, who lives in a special germ-free room at the Alberta Children's Hospital. Evan is the only child in Western Canada with a rare immune system disease.
Photograph by : Leah Hennel, Calgary Herald



Emma Poole, Calgary Herald
Published: Monday, February 05, 2007

From a second-floor isolation room at the Alberta Children's Hospital, little Evan Pogubila puts his hand to the glass.

Inside the room, Evan's mom holds the eight-month-old baby on her hip, bouncing him up and down while blowing against his chubby cheeks through her protective face mask.

For nearly half his brief life, Evan's mom hasn't been able to touch her lips directly to his silky smooth face.

She's not been able to touch him with her bare hands, or let the boy grab her hair. Evan's twin sister Jordan is the lucky one -- mom Melanie kisses her every day.

But Jordan has an immune system to protect her. Evan doesn't. His best chance for a normal life is a rare bone marrow transplant -- a procedure not available in Calgary.

The only portion of his mom's body that Evan has been able to see is her eyes.

The rest is a head-to-toe tarp, covered with sterile clothing, including a gown, cap, booties, and latex gloves.

"He is the boy in the bubble," explains Melanie. "I'm just raising my child in the hospital."

As the only child in Western Canada to suffer from severe combined immunodeficiency disease -- a condition brought to the public eye by a 1976 John Travolta movie, The Boy in the Plastic Bubble -- Evan has been living in solitude from the outside world for more than three months.

Any contact with the public -- from his twin sister to his cousins -- could compromise what little he has left of his immune system.

The closest Evan can get to playing with his twin is to grasp at her picture taped to the crib inside his hospital room.

"Kids are incubators and we can't risk letting her in there," Melanie said.

It was early November when Melanie noticed Evan's appetite begin to wane. He was breathing rapidly and "just wasn't interested in eating," she said.

It took 10 days for the doctors at the hospital to diagnose his condition as SCIDs. He hasn't left the hospital since.

"He loves to see people at the window. He loves to stare outside," Melanie says, adding Evan's care at the hospital has been first rate.

Caused by a genetic defect, SCIDs is the most rare -- and deadly -- of the primary immunodeficiencies.

Children with the disease lack lymphocytes, the white blood cells that the body uses to fight infection.

They suffer from an abnormal number of infections, including pneumonia and meningitis.

The world first learned of the disease more than 30 years ago after the diagnosis of American David Vetter, who lived for 12 years in a hermetically sealed plastic bubble.

Technological advances have prevented Evan from having to live in the same enclosure.

Instead, Evan will remain in the special hospital room waiting for a call from Toronto's Hospital for Sick Children to say a bone marrow donor has finally been found.

Transplantation is the only chance Evan has of beating the disease and leaving the hospital.

The problem, however, is that the family will have to move to Toronto for up to a year as the youngster undergoes treatment.

"I'm not a patient person, so this is killing me," Melanie says of the wait to find a matching donor.

No one in her family was an identical match.

The family has been told several suitable donors may have been found abroad, but more testing is needed.

"There's some excellent possibilities that they're pursuing," Melanie says.

While the Alberta government will pay for Evan's medical costs, estimated at $150,000, the family must absorb the bulk of the other expenses.

They can't stay at the Ronald McDonald House in Toronto because there are too many children there and the potential for germ exposure is high. Instead, the family will have to rent a furnished apartment -- at roughly $3,600 a month.

Evan's immunologist, Dr. Stephen Cheuk, said while bone marrow transplants on SCIDs patients are 90 per cent successful, it's imperative the family stay in Toronto for him to receive the best possible care.

Cheuk said Calgary doesn't have its own facility to do the procedure because it's so rare. There are too few patients to justify the cost.

"One a year just isn't enough.

To have a whole transplant unit is rare," said Cheuk, one of only three immunologist-allergists in Calgary.

It's estimated there are a handful of children in Canada with the same condition as Evan.

Once Evan gets to Toronto, he'll undergo chemotherapy to prime his immune system for the transplant.

The first few months after the procedure will be critical. His body can either accept the donor's marrow, or fight against it.

"Any little infection can potentially kill him," said Cheuk.

Despite the challenges ahead, Melanie said she's eager to get to Toronto. Getting there means being one step closer to taking Evan home for good.

When this ordeal is over, she's hoping to spread the word about the importance of donating blood and signing up as a bone marrow donor.

"The awareness just isn't there unless you're impacted by a friend or family member," she said. "I don't want people to feel sorry for us. I just want to raise awareness."

The family will hold a special donor clinic Feb. 12 in honour of Evan. The group will give blood at the downtown Canadian Blood Services offices.

Agency spokeswoman Doris Kaufmann said 80,000 new donors Canada-wide are needed this year to keep up with the rising demand.

"The number (of donors) are increasing, but we need more," she said. "We need more of an ethnic mix."

For more on how to donate, go to www.bloodservices.ca.

epoole@theherald.canwest.com

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