Baby boy fights illness

May 30, 2007

Baby boy fights illness
Drawn out

BY KIMBERLY POWELL
Wednesday May 30, 2007

BY KIMBERLY
POWELL
Lakeshore Advance staff
––––––––––––––––––––––
For the family of thirteen-month-old André Jeffrey, life is surreal. “Andre has made it through some really rough times,” says his mother, Sheila. “It’s unbelievable he made it though the times when I never thought he would.”
André was born to Sheila and Dennis a perfectly healthy baby until he was diagnosed with Omenn’s Syndrome (OS), a rare form of SCID (Severe Combined Immunodeficiency Disease) at two-months-old. André is one in three children with OS at The Hospital for Sick Children in Toronto.
OS is usually presented within the first three months of life. Infants with this disease are frequently sick and become ill with bacteria and viruses that unaffected babies easily fight before showing symptoms. For a child to develop this condition, he or she must inherit a copy of the same inactivated gene from each parent; who are usually unaffected because they only one copy of the inactivated gene and are considered “carriers”. When two “carriers” have children, there is a 25 per cent chance for the child to be affected.

Sheila and Dennis live as “single parents” under the circumstance. Dennis at home, North of Grand Bend, with their children Donavon, 7 and Monica, 5 and Sheila at The Ronald McDonald House in Toronto spending 12 to 13 hours a day in a gown, hat, mask, shoes and gloves in isolation with André at the hospital.
Dennis says it really takes a toll on his wife to be there alone. He drives to Toronto every weekend to be with his wife and youngest son. The other children go for a week once a month. They can attend school at The Ronald McDonald House but not visit their brother as children tend to more commonly carry viruses which puts their brother at risk. They haven’t seen him since he was admitted in August of last year. Dennis says it will be like having a brand new brother when André comes home.
André showed symptoms of a skin rash, high liver enzymes and swollen lymph nodes. A bone marrow transplant replaced the ineffective immune system. Until and following the transplant, diagnosed children are placed on a regimen of daily antibiotics to hopefully prevent life-threatening infections. With this success, patients can expect to lead normal, healthy lives.
It wasn’t the bone marrow transplant but the chemotherapy and other drugs that did damage to André’s lungs and kidneys when the family was told they would lose André at Christmastime, says Dennis. “The doctors were amazed he started coming around again.” Every time they get their hopes up they fall back and have more problems. Sheila says her son’s case has been such a long process. “There have been so many downfalls,” she adds.
Two months after André was in the hospital, the family was able to get a room at The Ronald McDonald House. “I don’t know what I would be doing without the help,” says Dennis. All the churches in the Zurich community donated money so the family could afford the cost of being in both places. The family can’t believe how the community has pulled together. Sheila says they are all praying for them and she thanks everyone from the bottom of her heart. Because there is no funding for immunology, Dennis will start fundraising so they can save the next family from having such a hard time.
The hospital always has something to lift your spirits. “The one thing I don’t like about the hospital is the lump I feel in my throat when I go there,” says Dennis. “I feel not only for my kid but every kid. I’m a part of everyone there.”
A seven-year-old boy being treated with chemotherapy was losing his hair. An incident with the boy losing his hat and causing him embarrassment inspired Dennis to shave his head to lift his spirits. He says 12 children the family became attached too have lost their lives. “It has come to the point where I don’t want to know anyone.”
Once discharged from the hospital in three to four months, André will move into the apartment on the isolated floor in The Ronald McDonald House with his mother until he completes his four visits per week for a month or two. His father is in the midst of preparing André’s fully-isolated bedroom where he will have to remain for another six months. Sheila says they have to take it day by day because it can change so fast.
The Jeffrey and Denomme family is hosting a benefit dance featuring Joe Overholt and The Standbys for André and his family on June 8 at the Bluewater Community Centre. The $10 tickets can purchased at St. Joseph’s Country Store, Thiel’s Mercantile, Zurich Variety or from any Jeffrey or Denomme family member.
Leslie Jeffrey, André’s aunt, says everyone is working together and getting it done. She says “Andre is a little fighter and we hope he continues to fight and come home.” Both sides of the family have said they will do whatever needs to be done.
“The people of Zurich and area have been absolutely, spectacularly, wonderful,” Leslie adds. So far, not a single solitary cent has come out of the family’s pockets for the benefit dance. “It’s heart-wrenching to see them go through this.”
Dennis says they were told in the beginning that this experience will either pull the family apart or bring them closer together. “It pulled us closer together,” he says.

linkback url: http://www.lakeshoreadvance.com/Local%20News/311180.html


Kids build on donation, raise $8,000 for charity

May 27, 2007

Kids build on donation, raise $8,000 for charity

Palm Beach Post Staff Writers

Sunday, May 27, 2007

PORT ST. LUCIE — It was a simple gift, something to hold when it hurt or got a bit scary, something to rest against during and after treatment.

For Tanner Wilson, 7, the pillow with its pattern of orange flames was perfect.

More local news

For the fifth-graders who gave it to him, who don’t quite understand what’s hurting him, the pillow answered an important question: How do you help?

It was a bold idea that Jenny Clancy brought to her friend Ronda Payne one day in November.

Clancy, a kindergarten teacher at Village Green Elementary, had seen an episode of Oprah in which the talk show host gave $1,000 to everyone in her 300-person audience. The $1,000 could be donated to any charity or used as seed money to raise even more for the charity of their choice. All she asked was that they document their activities with a video camera.

Clancy, 29, wondered how children might use such a gift. Would they make even more money? Would they understand the underlying message – that to give is to receive, that kindness can be passed from one person to another like a cookie jar that never runs out – and would they apply it to their lives?

Most of all, she wondered if it was even possible.

“I went to Ronda because I was like, ‘Could we do this? Am I crazy?'” she said.

Payne, a guidance counselor at the school, assured her the idea could work.

The only question was how to pay for it.

“I said, ‘Let’s see if we can do the elementary school version of this,'” Payne said.

Payne took the idea to a friend, a former teacher who won half of an $82 million Florida Lotto jackpot last year. The teacher, who once worked at Village Green Elementary, agreed to give the school $3,000 – enough for $100 for each of the school’s 29 classrooms – as an anonymous donation.

That gave Clancy the money to start. A January staff meeting gave her the approval of her principal and fellow teachers.

All that was left was to tell the kids.

Tanner was sick almost from birth.

Fluid gathered around his heart when he was 1 month old. He developed severe nosebleeds at age 2 and seemed to be constantly bruised. He went to the hospital with viral pneumonia.

Doctors thought he might have leukemia; then they didn’t know what was wrong.

“We just could not keep this child well,” said his mother, Becky Wilson.

It was an allergist who noticed that Tanner had abnormally low antibodies. That discovery led them to Tanner’s diagnosis: The then-4-year-old boy had a rare autoimmune disorder known as hyper-IgM syndrome, more commonly referred to as the “boy in the bubble” condition.

His body could not fight germs the way most can. Without a bone marrow transplant or constant treatment, Tanner would be unlikely to live past 30.

“I looked it up, and the world sort of started spinning,” Becky Wilson said.

Clancy asked the teachers at Village Green to let their classes pick the charities. She wanted them to find something that interested them, that felt like theirs.

“I thought, ‘How do we make this the kids’ project?'” she said.

All of Village Green’s classes chose to use the seed money to raise even more for charity. They dubbed the project Pay It Forward, reminiscent of the 2000 movie featuring the same concept.

Each class chose a charity: Special Olympics, Make-A-Wish Foundation, Humane Society, Gertrude Walden Day Care Center, American Heart Association, Dogs & Cats Forever and many others.

Some classes chose their charities after meeting someone like them – someone young but also sick, whose presence made diseases with long, unpronounceable names seem more real, more everyday.

Someone like Tanner Wilson. Someone like Cassidy Taylor.

Clancy’s kindergartners joined with the second-graders in Jeannette Craft’s class to raise money for the Cystic Fibrosis Foundation. They picked the charity after a visit from Lisa Taylor, a teacher at Manatee Elementary, and her daughter, Cassidy.

Cassidy, 4, has cystic fibrosis, a genetic disease that affects the lungs and digestive system. The condition can cause frequent lung infections and make it difficult to breathe. People with cystic fibrosis often do not live to into their 30s and 40s.

For the students in Clancy’s class, Cassidy was just another child. She walked into their classroom, put on an apron and started playing, Clancy said. She twirled around, blond hair flying, and won them over.

She just happened to have a terrible illness – one that the children referred to as “65 roses” because cystic fibrosis is too hard to pronounce.

“She was little; they could relate to her,” Clancy said. “They fell in love with her. They really did.”

Tanner, a first-grader at Village Green, was busy raising money for his class when he found out that students in two classes were raising money because of him.

One of those classes, Cat Crimley’s fifth-grade group, was making pillows to sell. The boy spotted one – black with orange flames – and knew it had to be his. It was boyish, he thought, and orange is his favorite color.

He had seen other people use such pillows, often called comfort pillows, during chemotherapy and other medical treatments.

Tanner, who gets intravenous medication at home every 21 days, knew just what to do with his.

“It goes under your arm,” he said.

The treatments are not painful, except for the initial sting of the IV’s insertion, but they prevent him from moving around for almost four hours as his body is pumped full of gamma globulin, a derivative of blood that has antibodies to help ward off infection.

During treatment, Tanner usually lies on the couch with a pillow behind his head, one under his arm and a bag of Cheetos in his lap. Sometimes he naps; most often he watches movies.

His nurse suggested that he rest the hand with the IV against something during his treatments so it wouldn’t get tugged or jostled.

The pillow would be the perfect place; the flames would give him a jolt of courage before the IV stick.

The teachers at Village Green still are unsure when it happened.

Sometime during the school year, in the midst of taking the Florida Comprehensive Assessment Test and doing all of the schoolwork that kids do, students at Village Green began to apply the lessons of the project to their lives.

Stories started trickling in.

About the boy who donated his allowance and the one who brought in his birthday money instead of buying a toy.

About the group of girls who helped one of their friends pay for school pictures when she didn’t have enough, and how that girl later loaned a friend lunch money.

About the time Clancy’s class donated the money it raised that week to another class to help it meet its fund-raising goal, and how that class later gave the cookies it won to Clancy’s students.

About Kaitlyn Hulka, 7, who woke up before her family one Saturday and set up an iced tea stand to raise money for Cats & Dogs Forever. She raised $27 and coaxed her older brother and neighborhood kids into helping.

About Anthony St. John, 6, who sold some of his prized model cars to raise money for cystic fibrosis.

“It was hard,” he said. “I did it for Cassidy.”

One by one, students at Village Green Elementary found a way to give.

They gave possessions, those small toys that can mean so much to a child. They gave of themselves, with time and effort. They gave and gave until they had given more than $11,000 to charity – $8,000 more than what they had been given to start the program.

“I thought it would be very helpful and kind,” said Cassidy O’Brien, a fifth-grader at the school. “I think that you should help people. One day if you need help, people will make a fund-raiser for you.”

For Tanner, his black-and-orange pillow reminds him of the fifth-graders who decided to do something nice for him, something to help. It is also a reminder to help others.

He has made care packages for other sick people, knowing from experience that cookies, crackers and ginger ale are nice to have when you’re in the hospital.

And he bought a pillow for a family friend who had cancer, hoping it would be a comfort to him during chemotherapy. Sadly, his friend, Dave Gessner, died before the pillow – patterned with fish from the Finding Nemo movie – could be delivered.

But Tanner learned what Clancy had so hoped that children would discover during the Pay It Forward project.

“He had to get IVs, too, so I thought it would make him feel better,” Tanner said of Dave. “Our friends gave me stuff, so I gave him stuff, and that’s why we do it.”

linkback url: http://www.palmbeachpost.com/localnews/content/local_news/epaper/2007/05/27/m1a_SLFORWARD_0527.html?cxtype=rss&cxsvc=7&cxcat=17


Cord blood saves first Singapore life

May 25, 2007

Cord blood saves first Singapore life

Singapore (dpa) – Toddler Hoh Sin Jin has become the first to receive a transplant of umbilical cord blood in Singapore, The Straits Times reported Tuesday.

The relatively new procedure was used to treat a potentially fatal condition known as bubble-boy disease. The baby’s condition had been critical and he was “already suffering from viral, bone and fungal infection,” said Associate Professor Tan Ah Moy, Head of Paediatric Haematology\Oncology at the KK Women’s and Children’s Hospital.

Blood taken from the umbilical cord is a rich source of immature cells that can develop into a wide range of different blood cells which can be used to replace diseased ones.

It took four months to find a positive blood type match for the baby. The two-year-old Sin Jin is now back home.

Launched in September 2005, the Singapore Cord Blood Bank (SCBB) is the first of its kind in the country and serves as a national resource to Singaporeans in need of a cord blood transplant.

It has banked 2,000 units in its registry, and aims for another 2,000 by next year.

The process not only involved its cost – a whopping S$300,000 (US$198,000) – but what was available in the blood bank.

Tan Ah Moy said, “The transplant alone costs between $80,000 Singapore (US$52,600) but there is a government subsidy of about 50 per cent.”

The Straits Times reported that families can turn to charitable organizations for financial help. These include KKH Health Endowment Fund, Ronald McDonald Fund and Children’s Cancer Society.

article url: http://www.bangkokpost.com/breaking_news/breakingnews.php?id=118906


Parker doing well

May 25, 2007

Our little friend Parker is doing well in Milan. Read about him at his blog (see the sidebar). He’s received his gene therapy cells and now is waiting.

Here’s his latest post: http://scidada.blogspot.com/2007/05/ac-milan-are-european-champions.html


Rx: Home Care

May 24, 2007

Thursday, May. 24, 2007
Rx: Home Care
By Caroline Kennedy

One of the most intriguing qualities of extraordinary people is that they often don’t feel that they are special. As they transform the lives of those around them, they say they are just doing what they have to do. Margaret Mikol is one such hero. In 1978, her daughter Julia was born with severe combined immunodeficiency, which required her to be kept in a completely sterile hospital environment–like the “boy in the bubble.” When Julia was 3 months old, she had a bone-marrow transplant that left her with a functioning immune system but unable to breathe on her own. Her hearing was impaired as well. She spent the next two years in the intensive-care unit at Memorial Sloan-Kettering Hospital in Manhattan.

Margaret moved into the hospital with Julia; her husband Yves continued working back home in Maryland and commuted to New York City on weekends. Julia’s hospital bills were about $350,000 annually. The Mikols quickly exhausted their medical insurance and had to rely on Medicaid. Caring for Julia at home would have been about $50,000 a year, but while the Federal Government would reimburse hospital care, it wouldn’t cover the cost of caring for a child at home.

Determined to create something closer to a normal family life for their daughter, the Mikols applied to a new federal program that allowed Julia to retain Medicaid coverage while being cared for at home. After a lengthy bureaucratic struggle, Margaret and Yves became the first parents in New York and the second parents in the nation to take home a child on life support. “The process transformed my personality,” says Margaret. “I had been a shy and timid person, and I became brassy and obnoxious. I changed into a beast to protect my child.”

For the next five years, the Mikols did everything they could to give Julia a normal childhood. But when Julia’s condition worsened, the 8-year-old refused the recommended heart-and-lung transplant, and her parents reluctantly agreed with her decision. Before her death, Julia asked her mother to promise to help other children. “You got me home,” she told Margaret in the sign language she used to communicate. “You’ve got to get them home too.”

Sick Kids Need Involved People (SKIP) is the fulfillment of that promise. The organization has helped more than 7,000 families deal with the myriad issues that come up with home care for children on life support as well as those battling cancer, HIV/AIDS, sickle-cell anemia, muscular dystrophy, cerebral palsy, autism and other conditions. Margaret and her staff of 250 help families navigate the hospital, insurance and Medicaid systems; assist them with school and housing issues; and counsel parents on how to care for the healthy siblings of a sick child.

Some SKIP clients, like Amy Goldman Putman, are relatively fortunate. Her son Jacob was born with serious lung disease and related complications. For the first few years of his life, he was dependent on a respirator and needed a feeding tube and round-the-clock nursing care (he threw up 18 to 20 times a day), all of which kept him going in and out of the hospital. Putman thought she was on the verge of a nervous breakdown. “When Jake was born, the world as I knew it disappeared,” says Putman. “Margaret knows the patient’s rights, comes up with a plan, tells you what you need to do and somehow makes it happen,” Putman says. “But most important, she gives you hope.” Jacob, now 14, is able to participate fully in school and recently traveled to Europe..

Other parents like Claudine Votto, the mother of four autistic children–4-year-old triplets and a 3-year-old son–fear that their children will need assistance throughout their lives and worry about who will help them get it. “I called so many agencies looking for help, and SKIP was the only one that even called me back,” she says. But there is a waiting list of thousands more families that SKIP, on its shoestring budget, cannot take on without additional resources. Margaret hopes one day to be able to build a clinically staffed residential community. “These families need a respite; they never get a break. They need to be supported in this effort,” she says. “Yet it is just indescribable how hard we make it for them. There is so much need wherever you look–all you need is a heart.” A heart like Margaret Mikol’s.

linkback url: http://www.time.com/time/magazine/article/0,9171,1625193,00.html


Weakened defenses

May 23, 2007

Weakened Defenses 

Creve Coeur 8-year-old struggles with severe immune system deficiency
Wednesday, May 23, 2007

Kim Freeman is accustomed to seeing her daughter, Sydnee, in poor health. The only thing worse is the idea of not seeing her at all.

Those are the possibilities for the mother of Sydnee Freeman, an 8-year-old Creve Coeur girl who is afflicted with severe combined immunodeficiency. The rare syndrome prevents the immune system from performing properly.

Sydnee is scheduled to receive a stem-cell transplant tomorrow at Children’s Memorial Hospital in Chicago.

“I’m going around every single day wondering if she’s going to catch something,” said Kim Freeman, 27, a divorced mother of three. “It’s like a time bomb. I always wonder, ‘Is this going to be the last (illness) she gets?’ On the other hand, I don’t know how I’m going to go up there and hand my daughter over to these doctors, knowing I could walk back out of the hospital without her. That’s what took me a year to finally come to the decision.

“She could catch something tomorrow and be gone. She could do the transplant and make it, or not. It’s a game of luck.”

Sydnee’s variation of SCID is deficiency of adenosine deaminase, which results from genetic mutations. Both parents, Kim and Brett Freeman, carry the recessive gene.

One of every 50,000 to 70,000 children born in the United States has SCID, with just 15 percent of those ADA deficient.

Insufficient ADA enzymes lead to low lymphocyte counts, thus preventing the body from fighting off everyday illnesses.

Sydnee receives bovine enzyme injections twice a week. For much of her life, she has ingested four pills a week to counteract a severely underactive immune system.

Medication alone costs thousands of dollars a week, and routine childhood illnesses such as chicken pox can lead to an extended hospital stay. Medical insurance held by Sydnee’s father long ago passed the $1 million lifetime cap, and Kim Freeman – an unemployed student at Illinois Central College – depends on public aid and ongoing fundraising events to try to keep up with mounting expenses. CEFCU locations collect donations for the Sydnee Freeman Benefit Fund.

Some SCID patients wear masks and are home-schooled to limit contact with other children. Freeman opts to send her daughter to Shute School in East Peoria, where she is in first grade.

“I choose to let her do a lot more than she should, because I would rather she enjoy the time she has,” Kim Freeman said. “Eight years ago, (doctors) told me I’d probably have my daughter until she was 3. Now she’s 8. I feel she should live – not be cooped up in the house and isolated.”

School personnel inform Sydnee’s mother of any outbreak of illnesses among students. A recent virus kept her out of classes for nearly two weeks.

“The precautions are up to me,” Kim Freeman said. “Their suggestions are, no Chuck E. Cheese’s, no public pools, no McDonald’s Playlands. They throw out the option of home-schooling. In the end, it’s my choice.

“I know one kid who’s home-schooled and he can’t go to the store or anywhere. But he’s like a baby. He’s so behind.”

Sydnee is behind schedule in her growth – physically, socially and mentally. She has learning disabilities, and times of isolation during illness have created a shyness around groups of kids.

But with maturity, Sydnee has become more aware of her condition – especially after Freeman gave birth to healthy twins nearly two years ago.

“Her quality of life is bad right now, because she’s getting to the age where she’s realizing what’s wrong with her,” Freeman said. “When I had the twins, she asked,

‘Mommy, why don’t they take medicine? Why don’t they get shots?’ At school, one of the mothers told her daughter what’s going on with Sydnee. The little girl went back to school and said ‘Sydnee’s dying.’ How do you fix that? She said, ‘I’m the sickest girl in the whole world.’ ”

Dr. Reggie Duerst, clinical director of the stem-cell transplant program at Children’s Memorial Hospital, aims to change that.

But nothing is guaranteed.

In 1999, Sydnee received a stem-cell transplant taken from the bone marrow of her mother at Duke University Medical Center in Durham, N.C. That transplant failed.

This time, Sydnee is matched with an anonymous marrow donor. In another variation from ’99, doctors administered chemotherapy for 10 days preceding the transplant. Chemo is used to reduce her blood-cell count before the donor’s cells are introduced.

Using a national database, an anonymous donor was found with nine of 10 matching points, or alleals. His blood cells will be introduced into Sydnee’s blood stream intravenously. Ideally, those blood cells will settle in her blood stream and begin forming more healthy blood cells.

“That is essentially giving Sydnee a new immune system,” said Jessica Guarino, a pediatric nurse practitioner at Children’s Memorial.

Stem-cell transplants can have a wide range of outcomes, ranging from successful development of a new immune system, to graft vs. host disease – in which the new immune system attacks Sydney’s cells and creates a host of new problems – to death.

Should a second stem-cell transplant fail, Freeman will consider the experimental, unproven route of gene therapy.

“I’m scared,” Sydnee said before leaving home. “I get needles. They’re going to make me better, so I won’t have to get shots.”

If all goes well, Sydnee and her mother will spend the next three months living in Chicago before moving back home to begin a new, normal life.

“I think she’s handling it great,” Guarino said. “She’s strong. I think she misses home, but she’s positive and she’s funny. Our nurses love her.”

Ryan Ori can be reached at 686-3264 or rori@pjstar.com.

linkback url: http://www.pjstar.com/stories/052307/HEA_BD3HC5VQ.022.php


David’s Dream Run a Success

May 21, 2007
David’s Dream Run a Success
By WOL Staff
The Woodlands, TX — Hundreds gathered in Market Street on Saturday, May 19, to participate in the annual David’s Dream Run 5K.The race honors David Vetter, or as many people know him, David the Bubble Boy. David was born with a genetic immune disorder called SCID, or severe immune deficiency disorder, which eliminated his ability fight germs and confined him to living in a plastic bubble.

David passed away in 1984 after an unsuccessful bone marrow transplant. In 1990, David Elementary was named in his honor.

The race raised over $235,000 for The David Center at Texas Children’s Hospital. The David Center is part of the Allergy and Immunology Clinic which provides care for asthma, allergy, immune dysfunction and AIDS/HIV.

Related Links:
David’s Dream Run Race Results
David’s Dream Run Photo Gallery

%d bloggers like this: