July 2005 Archives
The latest news from Charlotte and Roy A. Hagelin is that they found a match for Jacks stem cell transplant!
More about Jack soon.
Recorder Newspapers
Fairfield boy struggles with rare genetic disorders
By JACLYN STOLFI Staff Writer 07/22/2005
FAIRFIELD TWP – “Finding NEMO” was only half the battle for Jack Hagelin, 2, and his family, of Marian Court; now they have to beat it.
After two years of hospital stays and incorrect diagnosis, Jack was found to possess a rare combination of two mutated genes, ectodermal displaysia (ED) and nuclear factor kappa B essential modulator (NEMO).
Jack’s “normal” day varies greatly from other children his age.
Normalcy for Jack is a daily regimen of nine medications three times a day and two shots.
“I live by a clock,” said his mother, Charlotte Hagelin.
At night, Jack is fed intravenously through a tube for 10 to 12 hours. A formula provides him with all of his caloric needs.
“He doesn’t really know how to eat and enjoy food yet,” said Mrs. Hagelin. “There are days where he doesn’t eat anything at all.”
Despite his illness, Jack behaves like any other little boy.
“He drives me up a wall and acts like your normal 3 year old,” she said.
Jack’s personality has made him many friends, said Roy Hagelin, Jack’s father.
“Once you see Jack in action, it’s hard not to love him,” he said.
Jack was even made Honorary Firefighter for a day at the Fairfield Fire Department Wet Down on Saturday, June 18.
“Our neighbor is the fire chief and they wanted to do something special for Jack,” said Mrs. Hagelin.
Picked up by the fire truck and taken to the firehouse, Jack was presented with a child’s helmet and a turnout coat with a plastic axe, a walkie-talkie and a fire extinguisher.
Impressed by his disposition and energy, Jack’s parents feel that he is “one in a million,” however, he is also one of 15.
“Jack is one of 15 known cases in the world,” said Roy Hagelin, referring to his combination of ED and NEMO.
The ED gives Jack his sparse hair, sensitive skin, peg-shaped teeth and the inability to sweat.
“The only problem with ED that could be life threatening is heat stroke,” said Mr. Hagelin.
NEMO is a primary immune deficiency associated with ED. Jack is unable to fight infections, so is given intravenous immunoglobulins (IVIGs) or antibodies every 21 days.
Under the microscope, Jack has all the same cells as a healthy child, said Hagelin.
“His master cells just don’t know how to communicate with the rest of his cells to fight an infection,” he said.
Jack also has chronic diarrhea and lymphodema or lymphatic swelling which leads to frequent infections. He requires total parent nutrition (TPN) administered through tubes placed in his stomach.
“It’s a lot of things that no one would ever think of, our first child was healthy as a horse,” said Mr. Hagelin referring to his daughter and Jack’s only sibling, Christina, 7, a second grader at Adlai Stevenson School in Fairfield.
The disorders are passed on through genetics. Jack’s mother was a carrier and passed the trait on to her son.
It was not until after Jack was diagnosed that Mrs. Hagelin, even realized that NEMO might have caused the deaths of her twin brother and nephew who both died as babies.
“We’ve gotten into genetic testing,” said Mrs. Hagelin. “The whole family is getting tested.”
According to the Hagelins, Jack’s best hope is a stem cell transplant, giving Jack a new immune system and a new lease on life.
“Even with IVIG, not having a stem cell transplant, most children (with NEMO) don’t make it past 10 years old,” said Mr. Hagelin.
“We’re looking in January (2006) for a transplant and praying that it works,” he said.
Mrs. Hagelin quit her job as a hairdresser and manicurist to take care of Jack. She is a firm believer that love of a family helps sick children get better.
“My wife is the savior to Jack, when he is in the hospital she does not leave his side,” said Mr. Hagelin.
To play outside, Jack has to wear a rubber hockey helmet.
“If he falls or were to crack his head open he would most likely bleed to death because of his blood thinners,” said Mr. Hagelin.
To take Jack anywhere the Hagelin’s pack an arsenal of both comfort and medical items.
“Helmet, meds, diapers, wipes, creams,” said Mr. Hagelin. “It’s like packing for an infant.”
Jack was born on Sept. 4, 2002, and at only five weeks old, he was hospitalized for severe malnutrition and dehydration.
“They (the doctors) thought he had a severe milk protein allergy,” said Mrs. Hagelin. “He spent the next 10 weeks in the hospital.”
Jack developed swelling in his legs and doctors suspected a rare intestinal disorder called lymphangiectasia.
“In the two years of this suspected diagnosis (lymphangiectasia) he had 15 hospital stays for cellulitis,” said Mrs. Hagelin, describing cellulitis as an infection in the soft tissue of the skin because of swelling in lower extremities.
At Morristown Memorial Hospital, Morristown, Jack was tested and once again diagnosed with severe milk protein allergies.
In June 2003, the Hagelins flew Jack out to a children’s hospital in Pittsburgh, Pa., where Jack was examined by a team of specialists.
“You name it we saw it,” said Mr. Hagelin, “and came to find out they had nothing for us.”
Their next stop was a diagnostic specialist at Dupont Children’s Hospital in Delaware, who also offered no answers.
“We weren’t able to pin down a diagnosis on Jack and at the time he was growing two pointed front teeth,” he said.
Concerned that he might hurt himself, the Hagelins brought Jack to a local dentist who filed his teeth but provided no answers.
Meanwhile, Jack was on a restricted diet, excluding milk and soy grains.
“He was given elemental formulas,” said Mr. Hagelin. “Crazy stuff that we’d never heard of.”
In between doctor visits, Jack would go into dehydration and have to be hospitalized to gain weight. The Hagelins were next referred to Hasborough Children’s Hospital, Providence, R.I., where Jack was similarly diagnosed.
Still not sold on the allergy diagnosis, the Hagelins returned to Morristown Memorial for further testing.
Despite doctors’ insistence that Jack had lymphangiectasia, the scopes showed no signs of the disorder.
“We kept going back and forth waiting to see if anyone came up with anything else,” said Mr. Hagelin.
From, Jan. 1 2004, to July 2004, Jack suffered several cellulitis infections and in March began receiving TPN through a gastronomy tube (g tube), placed in his stomach to administer nutritional fluids.
“That year we had spent close to 100 days in six months in hospital stays,” said Mrs. Hagelin.
Taking matters into their own hands, the Hagelins drove out to Ohio in October to visit the Cincinnati Children’s Hospital.
Using Jack’s g tube the doctor performed a test that ruled out food allergy and lymphangiectasia, however, dental X-rays were the catalyst for Jack’s ED diagnosis.
“The senior pediatric dental resident took one look at Jack and said ‘I think he has ectodermal displaysia,’” said Mrs. Hagelin.
The first the Hagelins had ever heard of ED, they researched the disorder and were astounded by their findings.
“We couldn’t believe how for two years we went on possible diagnosis of severe milk protein allergy,” she said.
The Hagelins also met with an immunologist, who suggested that Jack had nuclear factor kappa B essential modulator mutations syndrome (NEMO). That was another disorder the Hagelins had never even heard of.
The Hagelin’s were relieved to have a partial diagnosis.
“What a load off our backs,” said Mrs. Hagelin. “Finally, we had a label for what was going on in him.”
After Ohio, Jack was placed on a prophylactic antibiotic to help avoid infections and shortly thereafter, test results verified that he had NEMO.
Despite the advances made in Ohio, it wasn’t until Jack’s first trip to the Children’s Hospital of Philadelphia, Pa. (CHOP) that “all the pieces of the puzzle would start to come together.”
After a chest X-ray at Saint Barnabas revealed possible pneumonia and an expedient broncoscopy was needed, the Hagelins reached out to Dr. Jordan Orange in Philadelphia, Pa.
“We were familiar with him because after looking up NEMO on the computer, he was the guy writing all the articles,” said Mr. Hagelin.
Orange retested Jack and found that he not only possessed NEMO but he “had his own strand of NEMO, a type of NEMO that has never been seen before,” said Mr. Hagelin.
After returning home Jack was back in St. Barnabas in February. While in the ICU, one of Jack’s eyes began to cross and an MRI revealed that Jack had suffered a stroke.
He was Medivaced out of St. Barnabas and taken to CHOP to see a stroke specialist.
Dr. Orange was away and the Hagelins felt as if they were “flying without their safety net.”
“He is Jack’s savior and we rely on him heavily to guide us on Jacks’ s care,” said Mr. Hagelin.
Jack came out of the stroke after a five-week hospital stay and care from a new group of specialists.
“The stroke changed Jack’s care for the better, they’ve really got a handle on him,” said Mr. Hagelin. “I wouldn’t say we’re in the clear, but Jack is getting some normalcy in his life.”
Every 21 days Jack has to go to Philadelphia for his IVIG treatments, however, with his doctors’ appointments Jack is in Philadelphia three weeks out of each month.
This whole experience has brought a close family even closer and given the Hagelins a new perspective, they say.
“When you wake up in the morning it’s a new day, it’s one more day that we have (with Jack),” said. Mr. Hagelin.
Mrs. Hagelin is planning a fund-raiser in the fall.
“I’ve started putting together a charitable organization in Jack’s name to help defray the costs of medical expenses,” she said. “My husband and I are the worst people when it comes to this. We’re used to giving money, not taking it.”
Information on ED and NEMO can be found at www.nfed.org, the National Foundation of Ectodermal Displaysia or www.andy.org.mx.
Green light for 'designer babies'
31.07.05
By Amanda Cameron
An Auckland clinic has been given the go-ahead to begin screening embryos for parents wanting to give birth to babies without genetic disorders. The screening technology - pre-implantation genetic diagnosis (PGD) - will allow parents who are at risk of passing on certain inherited diseases to choose a "healthy" embryo to start a pregnancy.
The long-awaited move has been welcomed by parents keen to use the service, but opponents fear it is the start of a slippery slope towards "designer babies" and discrimination against those with disabilities.
Ethical guidelines approved in March prohibit parents from using PGD for social reasons, such as to choose a sex.
...
Right to Life spokesman Ken Orr said the group strongly opposed PGD because it would be used to deny children with disabilities the right to be born.
"We see it as a search and destroy mission," he said. "The message this community is giving to society is that, unless you're well and healthy, you don't have a right to be here."
It is expected that between 15 and 30 people a year will seek PGD to screen for single gene disorders.
Parents Donna Slater, 37, and Steve Annan, 36, were devastated to learn they were both "carriers" of the defective gene responsible for the inherited disease. "We wouldn't have married if we'd known," says Mrs Slater.
To those who say she has no right to "play God", Mrs Slater says: "Walk in my shoes for just one day and you'll understand."
Read the complete article via The New Zealand Herald here.
My current word count is 105,310 words.
Page Count?
Industry standard preferred length is 250 words per page.
My book is 421.24 pages long.
And I still have things to tell...
Forty six days ago I had a word count of 78,349. I wrote 26,961 words from that date to today, thats 586.11 words per day.
If I keep like this by Dec. 31st. 2005 I will have a book of 805.73 pages.
Designer baby Jodie leaves hospital
By Nigel Gould
19 July 2005
She may be only four days old - but little Jodie Fletcher is already a history-maker. And this is the first picture of the babe-in-arms since leaving the Royal's maternity unit in Belfast for her new home in Moira. Tiny Jodie is everything Julie and Joe Fletcher dreamed of - and more. But she is an extra-special little baby.
For Jodie, delivered by Caesarian section last Thursday, is the UK's first designer baby.
She is a genetic match for her brother, Joshua (3), who suffers from the rare and incurable Diamond Blackfan Anaemia (DBA) which means his body does not make enough red blood cells. Because of this she offers him his best hope of long-term survival.
Jodie arrived home yesterday with her mum and dad.
After she was born stem cells were collected from umbilical cord blood.These are now in storage and will be used when doctors give the go-ahead for them to be transplanted into Joshua.
...
"First we have to wait and see if Jodie has the same condition as Joshua. It should only be a few weeks before we know if she has anaemia or not.
The Fletchers have another son, Adam, but neither he nor his parents were the perfect match. Jodie is the first so-called "saviour sibling" of any kind to be conceived in the UK.
Read complete article via Belfast Telegraph here.
And related article "Born to save big brother's life. Designer baby Jodie's gift of hope" here.
During my experience as a speech language pathologist intern at Emerson College, I learned a tremendous amount about the assessment and treatment of speech and language disorders of both children and adults from expert clinicians and professors. However, I think one of my best teachers was Andy. Andy taught me a lot about courage, determination, humor and living in the moment. I remember fondly his curiosity about new things, his great laugh and his love for his family. Andy’s family is instrumental in who Andy is, a caring and thoughtful young boy who continues to fight to live. Andy has taught me what it is like to care about my clients, to care about their families and to truly want to make a difference in their lives. I can only hope that in some small way, I made a difference in his life.
From Andy’s website on his therapists…
A physician, walking home after a long day of caring for patients, strolls along the river. He hears a voice yell out, "Help me, I'm drowning." The physician dives into the river and pulls the individual out of the water. Minutes later, he hears another voice. Again he throws himself into the water and emerges with another survivor. Soon, there is a chorus of voices calling to him from the water. Exhausted, he takes a breath before turning to jump in again. But first, he notices a basic scientist on the hill. "Come help me save these people," the physician calls to her. "There are too many people drowning here." Thoughtfully scratching her chin, the scientist declines. "That's an interesting observation," the scientist says. "I wonder who is upstream throwing all these people in the river. I think I will head upstream to find out. Exhausted, he takes a breath before turning to jump in again. But first, he notices a therapist on the hill."Come help me save these people," the physician calls to her. "There are too many people drowning here." With enthusiasm the therapist accepts. "Lets teach them how to swim," the therapist says. The therapist dives into the river and teaches the individuals how to swim out of the water.
Picture taken April 25th. 2003
Leigh-Anne Porter was Andy's speech language pathologist at Emerson College during the period 01/08/03 to 05/09/03.
She contacted us recently and purchased a Live Immune wristband.
Thank you Leigh-Anne!
Its official, Dr. Geha and his team of Immunologists at Children's Hospital Boston found the genetic roots of another immune deficiency. The gene is called TACI and its related to IgA deficiency. Children with TACI have low levels of immunoglobulin A (IgA), immunoglobulin G (IgG) or both.
Dr. Geha is Andy's doctor.
TACI/IgA deficiency affects 1 in 600 people. For reference NEMO affects 1 in 250,000 people.
One of the articles I found includes the following words from Dr. Geha,
"A test for TACI would allow for diagnosis of more children and their relatives," says Geha, senior author of the study and a professor of pediatrics at Harvard Medical School.
This discovery is great news!
It also means that via PGD families affected by TACI can prevent and treat the disease.
Here's the article via Nature Genetics:
TACI is mutant in common variable immunodeficiency and IgA deficiency
Here are some news the stories:
Via Medical News Today:
Gene Discovery May Explain Recurring Infections
Via MedIndia
Gene responsible for immune deficiency discovered
Via Adscribe
Gene for Immune Deficiency Syndromes Found; Finding May Yield New Test to Explain Recurring Infections
Dr. Geha is the chief of Children's Hospital Boston's Division of Immunology. Geha was one of the doctors who discovered the unique genetic mutation on the NEMO gene that causes Andy's PID. His center is working to determine the molecular basis of PID research and treatment at Children's.
If you want to make a donation contact Brandt Henderson in the Children's Hospital Trust at (617) 355-5342 or brandt.henderson[at]chtrust.org.
Research backs 'Lorenzo's Oil' treatment of disease
Early detection called key to effectiveness
By Carey Goldberg, Globe Staff | July 12, 2005
New research offers scientific vindication for the parents whose fight to save their ailing son inspired the 1992 movie ''Lorenzo's Oil." It comes too late to help the real-life Lorenzo, who is nearly totally paralyzed, but suggests that the oil could help save future generations of boys from the same, fatal nerve disorder.
The paper, published yesterday in the Archives of Neurology, found that the oil was often effective at fending off symptoms in young boys who had the genetic disease that has devastated Lorenzo Odone. Among the 89 boys who started taking the oil before symptoms appeared, only 11 percent went on to develop them, compared with the usual 35 percent.
Read the complete article here. (Thank you Matt)
Mexican woman gives birth to 6 girls
Associated Press
Jul. 6, 2005 02:30 PM
MEXICO CITY - A woman in northern Mexico has given birth to six girls and all are doing well, her doctor said Wednesday.
Joana Elizabeth Sanchez, 25, gave birth by Caesarean section on Monday to babies that weighed between 2 pounds 8 ounces and 2 pounds 14 ounces at a private hospital in Monterrey, said Dr. Victor Manuel Pina.
The girls, with a gestation of 32 weeks, were born without problems "and now have passed the most difficult stage," he said.
He said Sanchez had been taking medicine to stimulate ovulation.
Her husband, Juan Gabriel Moreno, is a sales agent.
Got the story via azcentral.com here.
Send Mr. Moreno a gift here (and help Andy)
Baby born on flight from Tijuana to Mexico City
Associated Press
Jul. 5, 2005 01:22 PM
MEXICO CITY - Noelia Mesimo may have some trouble filling out her son's birth certificate. Place of birth? Somewhere over western Mexico.
The 28-year-old went into labor Monday on an Aeromexico flight from Tijuana to Mexico City and gave birth before the plane could make an emergency landing in Guadalajara, Aeromexico said in a statement.
The statement said Mesimo didn't appear pregnant when she boarded the plane and she didn't tell the airline of her pregnancy until she went into labor.
A doctor, two passengers and three flight attendants helped with the delivery.
Mother and baby were doing fine Tuesday in a Guadalajara hospital.
"Our employees and our planes are prepared for events like this," said Carlos Bonilla, a spokesman for Aeromexico. "We are glad everything had a happy ending."
Got the story via azcentral.com here.
Send Noelia a gift here (and help Andy)
SCHOLAR - A person who posesses a great deal of knowledge, usually an academic who specializes in a particular subject area.
What is it? I do a RSS read via PubMed with the authors name and publish it on andy.org.mx
New Scholar Dr. David Baltimore
Other Scholars I'm keeping track of:
I'm currently keeping track of,
Dr. Jordan S. Orange
Dr. Raif S. Geha
Dr. Ashish Jain
Dr. Francisco Bonilla
Dr. Ofer Levy
Dr. Samuel Nurko
Dr. Sung-Yun Pai
Giving Genetic Disease the Finger
By Sam Jaffe
Scientists are closing in on techniques that could let them safely repair almost any defective gene in a patient, opening the door for the first time to treatments for a range of genetic disorders that are now considered incurable.
The breakthrough, announced in the journal Nature in June, relies on so-called zinc fingers, named after wispy amino acid protuberances that emanate from a single zinc ion. When inserted into human cells, the fingers automatically bind to miscoded strands of DNA, spurring the body's innate repair mechanism to recode the problem area with the correct gene sequence.
Read via Wired here.
Abuelo Victor emailed this picture of his grandparents today.
This is a picture of Isidro and Rosita Treviño's wedding. The wedding took place in Monterrey, Mexico in 1916.
My great grandparents, Andy & Sofia's great-great grandparents:
Keith Lockhart
Conductor of the Boston Pops
"To Andy.. Get well and come home soon!"
Contribution of Roberta Whalen.
More autographs here.
A story of a Bridgewater, MA. family thinking about PGD to cure twin girls of thalassemia, treated at Children's Hospital Boston. Some of my comments in the middle of the article in CAPS below.
Creating a life to save two others
By Jean Porrazzo, Enterprise staff writer
...
The technology is there to screen embryos for genetic diseases and to find a DNA match before it's implanted in the womb. But the process opens a Pandora's box of ethical concerns over having a child for the purpose of saving another, and over what should be done with embryos that the parents deem unsuitable.
ATF comments - WHAT SHOULD BE DONE?
HOPEFULLY GOD WILL HELP US FIND MORE OPTIONS IN THE NEAR FUTURE TO BE ABLE TO CURE TERMINAL DISEASES WITHOUT SUCH AN AGRESSIVE TREATMENT AS TRANSPLANTATION AFTER BIRTH.
CRYOPRESERVATION OF THE EMBRYOS IS AN OPTION FOR NOW.
At the center of this moral and religious debate is the status that is given to the pre-implanted embryo — is it a collection of cells or a human being?
ATF comments - A COLLECTION OF STEM CELLS WITH INCREDIBLE POTENTIAL. THOSE STEM CELLS STILL NEED TO BE IMPLANTED TO THEIR MOTHERS UTERUS AND ONLY GOD KNOWS WHAT HAPPENS THERE... IN A MAGICAL MOMENT THOSE CELLS IMPLANT TO THE WOMB AND START TO DIFFERENTIATE. THE CELL STARTS TO DIVIDE AND FOLLOWS A SPECIFIC PATTERN OF GROWTH.
The twins are being treated by Dr. Melody Cunningham, director of the thalassemia program at Children's Hospital in Boston...
Regarding the ethical issues, Cunningham said, "My feling is our job as physicians is to let families or adult patients know what all of the options are — get them all of the information and let them choose what they want to do."
ATF comments - THE FAMILY SHOULD ALSO BE INFORMED THAT THE QUANTITY OF STEM CELLS GATHERED FROM THE UMBILICAL CORD MAY NOT BE ENOUGH FOR THE TRANSPLANT PROCEDURE OF ONE PATIENT. THERE ARE SOME TECHNIQUES TO MULTIPLY THOSE STEM CELLS BUT THEY ARE STILL ON TRIAL.
The Roman Catholic church does not approve of in-vitro fertilization and gives the embryo human status because the embryo has all that is needed to develop into a human, said Msgr. Francis J. Maniscalco, director of communications at the U.S. Conference of Catholic Bishops. "It begins right at conception and is treated and respected as a human being," Maniscalco said. "We believe science has backed us up."
ATF comments - THE EMBRYO WITHOUT HIS MOTHER DOES NOT HAVE ALL THAT IS NEEDED TO DEVELOP INTO A HUMAN. YOU CANT GROW A HUMAN ON A PETRI DISH (AS FAR AS I KNOW).
ACCORDING TO MY PRIEST, CATHOLICISM ALSO ACCEPTS THE 'LESSER EVIL OF TWO EVILS'. I BELIEVE THAT LETTING MY SON DIE WITHOUT DOING ANYTHING IS WORST THAN DOING IN VITRO FERTILIZATION.
The Catholic Church believes the act of intercourse in marriage is "unitive," which means it is a bond of love between the spouses and at the same time procreative, he said.
ATF comments - THATS RIGHT. THE EMBRYO ALSO NEEDS A FATHER...
Conception through in-vitro fertilization separates the bond of love from the procreation. "We don't find it to be moral," Maniscalco said.
ATF comments - I LOVE PAULINA... AND I LOVE HER EVEN MORE NOW, SHES INCREDIBLY BRAVE.
Also at issue for the Catholic church is that in-vitro fertilization usually involves more than one embryo and there will be spare embryos which the church believes should not be destroyed, he said.
ATF comments - WE SHOULD PRAY TO HELP DOCTORS AND RESEARCHERS FIND MORE TOOLS TO CURE TERMINAL DISEASES. CRYOPRESERVATION IS AN OPTION FOR NOW.
"This is a major concern," Maniscalco said. "They are human, yet they are treated as a byproduct. Morally, we just don't approve of that."
ATF comments - I THINK THAT NO ONE IS TREATING NO OTHER AS A BYPRODUCT.
The only experimentation on the embryo should be for the sake of the embryo to live a healthy life, not to help a second party, he said.
"The embryo deserves the respect given to the human being," Maniscalco said.
ATF comments - I WOULD LIKE TO ASK MANISALCO HIS BLOOD TYPE.
I DONT UNDERSTAND.. I'M CATHOLIC AND I WAS TOUGHT TO HELP OTHERS, AND I DO KNOW MY BLOOD TYPE AND I'M REGISTERED AS A ORGAN DONOR..
SO ACCORDING TO THIS AN EMBRYO EQUALS A HUMAN... AND AN EMBRYO SHOULD ONLY BE INVESTIGATED OR TESTED 'FOR THE SAKE OF HIS LIFE, A HEALTHY LIFE'.
THEN HUMANS (AS THE EMBRYOS) SHOULDNT BE INVESTIGATED OR TESTED FOR THE SAKE OF THE LIFE OF OTHERS?
THAN WHAT DO WE NEED BLOOD TYPES FOR?
The key from the Jewish perspective is the intent of the in-vitro fertilization, said Rabbi Loel Weiss of Temple Beth Am in Randolph.
"If the intent is to ultimately have healthy babies and implant them into the mother, then the Jewish tradition would absolutely permit that," he said. "If its purpose is simply to use the embryo for the benefit of the living babies and then destroy the embryos, it would be more problematic.
"In any event, Jewish law does not view an embryo as a human being," he said.
ATF comments - AM I JEWISH? I JUST FOUND OUT!
The intent of the couple is also what Dr. Halina Wiczyk looks at. She is reproduction endocrinologist at Bay State Medical Center in Springfield, where she is co-chairman of the hospital's ethics committee.
The fact that the couple wants a child that is not affected by this very debilitating disease, and that they would implant healthy embryos even if they were not a match for a bone marrow transplant, "says a lot of who the couple is and what they're looking for," Wiczyk said.
"Looking at the intent is the most important thing," she said.
"They would like to have a child that's healthy and if that child could help the other two, it is a bonus," she said.
ATF comments - I FEEL LUCKY TO BE ABLE TO KNOW THE GENETIC DETAILS ABOUT THE CONDITION THAT AFFECTS MY FAMILY (AT LEAST ONE OF THEM). AND I PRAY THAT OTHER PEOPLE ARE ALSO ABLE TO FIND THE DETAILS ABOUT THE CONDITION THAT AFFECTS THEIR FAMILIES.
Pre-implantation genetic diagnosis is used in conjunction with in vitro fertilization, and involves testing an embryo for certain conditions prior to being placed in the womb of the woman.
Wiczyk recommends that the couple have extensive psychological screening and some kind of counseling.
ATF comments - LETS SEE..
"EXTENSIVE PSYCHOLOGICAL SCREENING"
EXTENSIVE = GREAT IN RANGE OR SCOPE
PSYCHOLOGICAL = THE STUDY OF BEHAVIOUR, MIND AND THOUGHT.
SCREENING = TESTING FOR DISEASE IN PEOPLE WITHOUT SYMPTOMS.
OK, OK..
I CONFESS, I DO HAVE A STRANGE DISEASE SINCE NOVEMBER 2000. THE DISEASE IS CALLED 'BLOGGING'.
"This one doesn't bother me as much," she said about the DeBoes' situation. "It's when you start getting into (screening for) characteristics." As more technology becomes available, the chances of screening for certain characteristics — what some call making "designer babies" — go up and physicians are concerned about that. "It's going to happen," Wiczyk said.
Wiczyk has heard that there is someone offering couples pre-implantation genetic diagnosis to select the sex of a child.
ATF comments - GO TO MICROSORT FOR THAT. AND ITS NOT THE SOFTWARE COMPANY.
Massachusetts Citizens for Life believes "embryos are human beings" and "science backs up the fact that a fertilized egg is a person," said Marie Sturgis, executive director of Massachusetts Citizens for Life.
ATF comments - I DISAGREE.
IF A FERTILIZED EGG IS A PERSON THEN I HAVE SEVERAL FROZEN PERSONS AT A FERTILITY CLINIC IN READING MA. AND THAT SOUNDS REALLY SCARY.
Advancements in science now make it possible to create artificial wombs with placental material and in time they will be able to raise donated embryos, she said. "This is Frankensteinian kind of thinking," Sturgis said.
ATF comments - THIS IS THE FIRST TIME I HEAR ABOUT 'ARTIFICIAL WOMBS' AND 'PLACENTAL MATERIAL'. I FIND IT DIFFICULT TO BELIEVE...
Read the complete article via The Enterprise here.
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Just use the search box below... Its true! It really works!
The search box below contains all the information (code) that Wal*Mart needs to send "The Andy Fund" a check after your purchase.
Do you need something from Wal*Mart?
You just need to use the search box below and purchase something at Wal*Mart.
You will help Andy and you will help other children with primary immune deficiency.
How much will Wal*Mart contribute?
5% on Movies, Music, Video Games
6% on Electronics
8% on Books, Toys, Tires, Sports, Photo Center, Optical, and Home
12% on Gifts & Flowers, Jewelry and Apparel
$10 - $20 flat fee on DVD Rentals
