Family Spotlight

A COTA Teenager Who Hoped for a Miracle ... and Received One

Ashley Reese spent most of her life doing what she loved and did very well -- cheerleading. However, at the beginning of her junior year of high school in the fall of 2005, she began experiencing incredible stomach pains. Her parents, ReNell and Mike Patterson, were initially told she was suffering from a ruptured ovarian cyst.

After nearly 50 doctor visits and hundreds of tests, they were hit with devastating news. Ashley was diagnosed with Budd-Chiari, which is a rare disorder caused by blood clots completely blocking the veins that carry blood from the liver. A liver transplant was her only chance for survival.

Ashley's community rallied to help her family and within weeks of hearing the diagnosis, reached out to the Children's Organ Transplant Association (COTA) for assistance. According to ReNell, "We had insurance, but you have to prove financial backing to get on the organ waiting list. With COTA, our team raised a lot of money in a short period of time. By mid-November, Ashley was placed on the transplant waiting list."

The gift of a lifetime came on Christmas Day 2005 when Ashley's family received the call that a liver was available. She was flown to Texas Children's Hospital in Houston where she received her second chance at life on December 27, 2005. Ashley has had a remarkable recovery, and life, since her transplant day.

She was able to return to her high school's cheerleading squad for her senior year. Today, Ashley feels great and is attending South Plains College in Levelland, Texas, where she is pursuing an elementary education degree. Perhaps, one day she will be a cheerleading coach as well.

According to Ashley, "With COTA on my side, I knew that I would get on the transplant list as soon as possible. That gave me incredible hope."

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Transplants Today

Study Urges Change for Liver Waitlists

Some patients at the bottom of liver transplant waiting lists could get organs faster with a modest change to the scoring system that prioritizes patients on the lists, according to research published in mid-September in the New England Journal of Medicine.

The system, which ranks patients based on three factors, could be improved by adding a fourth test that measures levels of serum sodium -- an indicator of severe sickness in a key group of liver patients, researchers from Mayo Clinic recently reported.

“The data pretty strongly indicates that this could save lives,” Dr. W. Ray Kim, the study’s lead author and a hepatologist at Mayo Clinic’s campus in Rochester, Minnesota. Altering the allocation system known as MELD (Model for End Stage Liver Disease) was one of several options proposed by experts after a Minneapolis
Tribune-Review investigation earlier in 2008 that showed some patients get liver transplants when they do not need them. Doctors have specifically advocated tweaking the MELD score by adding the serum sodium test, a factor that is being examined by the United Network for Organ Sharing (UNOS).

The serum sodium test has been particularly effective in predicting death among patients with cirrhosis, Dr. Kim said. Low levels of serum sodium indicate severe illness in some patients who would otherwise have low MELD scores. Those patients almost always are afflicted by a condition known as ascites, in which fluid builds up in the abdomen. Nonetheless, they get stuck at the bottom of waiting lists, Dr. Kim said.

The Mayo Clinic researchers created a statistical model using 2005 data provided by UNOS. Using the model, researchers analyzed data from 2006, when 477 patients died within three months of being listed for a liver transplant. Using the serum sodium factor showed that 7% of those patients would have received higher priority for a transplant, perhaps preventing their deaths.

Source – www.trannews.com

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Embryonic Stem Cells Reduce Transplant Rejection

Researchers at the University of Iowa and the Iowa City Veterans Affairs Medical Center have shown that immune-defense cells influenced by embryonic stem cell-derived cells can help prevent the rejection of hearts transplanted into mice, all without the use of immunosuppressive drugs. The finding, reported online in the journal PLoS ONE, has implications for possible improvements in organ and bone marrow transplants for humans, Medical News Today recently reported.

“The idea behind the study is to ‘prep’ a recipient’s immune system to make it receptive to the eventual organ or bone marrow donor’s genetic make-up,” said study principal investigator Nicholas Zavazava, MD, PhD, Professor of Internal Medicine and Director of Transplant Research at the University of Iowa Carver College of Medicine. “The approach involves taking embryonic stem cells with the same genetic background as the donor from which the organ or bone marrow ultimately will come and adapting them into another type of stem cell that can be injected into the recipient.”

Specifically, the team treated mouse embryonic stem cells with a ‘cocktail’ of growth factors, causing them to become blood stem cells. These cells express very low levels of transplantation antigens and are therefore protected from immunological rejection. Researchers then injected the blood stem cells into the recipient mouse’s blood circulation. These stem cells found their way into the recipient mouse’s thymus, where (as happens in humans) the recipient’s own bone marrow cells typically migrate and develop into immune-defense cells known as T-cells.

With the donor-related blood stem cells now present in the thymus, the mouse recipient’s own T-cells learned to recognize them as part of itself and therefore caused no rejection. These now ‘donor-friendly’ T-cells then circulated within the recipient mouse’s blood.

When researchers transplanted into the recipient mouse a donor mouse heart that had the same genetic make-up as the previously injected stem cells, the T-cells did not reject the heart because they recognized it as compatible.

Source – www.trannews.com

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COTA News

COTA Ends Year with Record Number of Children Successfully Transplanted

The Children's Organ Transplant Association (COTA) recently announced that a record-setting number of its children and young adults were successfully transplanted during the past fiscal year. During fiscal year 2008 (July 1, 2007 – June 30, 2008), COTA assisted a record 111 new families, and raised nearly $4 million for patients' transplant-related expenses. Additionally, nearly 80 patients were successfully transplanted, which is the ultimate goal of the organization, during the twelve-month period.

"COTA's unwavering commitment to giving hope and making miracles for each patient family is underscored by the organization's nearly 100,000 volunteers and contributors who, during the past 22 years, have generously donated their time and their money to COTA. To us, these volunteers and contributors are indeed heroes, and are COTA's Miracle Makers," said Rick Lofgren, COTA President and CEO.

"Giving Hope ... Making Miracles is more than a slogan for the Children's Organ Transplant Association (COTA) -- it is a guiding vision. Since its inception COTA has become the premier organization providing fundraising assistance to families facing a life-saving transplant
by assisting some 1,300 patients. Families from throughout the country, representing
every ethnic, economic, religious, and social background, have worked with COTA.
Their volunteers and supporters have donated nearly $50 million to assist with transplanted-related expenses."

Along the way COTA's team of professionals and these families have shared tears, conquered huge obstacles, hoped, and, together, have celebrated more than two decades worth of miracles, Lofgren noted.

The Children's Organ Transplant Association is a 501(c)3 national charity dedicated to helping families of children and young adults who need or who have had a life-saving transplant. COTA's patients are primarily children, but COTA also serves adults with genetic diseases like Cystic Fibrosis and Sickle Cell Anemia. COTA's mission statement reads: The Children's Organ Transplant Association helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Weekly Processing of Reimbursement Payments
Working through a local Trustee, patients' families submit their payment requests to the Children's Organ Transplant Association. Requests are processed every week. Should a COTA patient require immediate assistance, COTA's staff is available 24 hours a day to assist families with medical emergencies. Families are encouraged to discuss any unique situations with COTA's staff, all of whom are committed to ensuring that each family's needs are being met.

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