Family Spotlight

Meet Gregory Ramsey … A COTA Miracle

Until his 10th birthday, Gregory Ramsey had been a full-time boy, avidly participating in soccer and Tae Kwon Do. Looking back, his parents, Darren and Mary, remember that he bruised easily, but they never really worried about it. On a September day in California in 2005, Gregory came to the breakfast table wrapped in a blanket, and his parents decided to seek medical advice. His first round of tests came back with a diagnosis of pancytopenia, a low production of red and white blood cells and platelets. In January 2006, the diagnosis changed to aplastic anemia. Forced to withdraw from all sporting activities, Gregory started treatment. When those treatments failed, Gregory was tested again and in February 2007 the family received the awful diagnosis: fanconi anemia. The only treatment is a bone marrow transplant.

Faced with mounting expenses, the Ramseys were told to contact the Children’s Organ Transplant Association (COTA) to find some relief from the mounting stress of the diagnosis and from the news that they would relocate from California to Minnesota for treatment. “Almost instantly, COTA guided a group of our family and friends through fundraising efforts that proved to be a true lifesaver for our family. We were so far from home. COTA provided a website that allowed us to keep our family informed about Gregory’s health, and allowed our friends to send us their prayers.”

According to Darren and Mary, “COTA means there is someone out there fighting for your family’s financial needs so you can spend your time fighting for your child’s health -- not worrying about money. COTA meant we were not alone in Gregory’s transplant journey … COTA gave us hope.”

Luckily a match was found quickly. Gregory received his transplant, and his second chance at life, at the University of Minnesota Medical Center, Fairview on December 13, 2007. The family remained in Minneapolis until late March 2008.

“With the many prayers God answered for Gregory through his transplant team and through our COTA network of support, our family was able to witness a miracle,” said his parents. “This was the most unbelievable time of our family’s life.”

In December 2008, the Ramseys returned to Minneapolis for a series of one-year follow-up tests. Gregory is feeling much stronger, is participating in many of his favorite activities in his new school, and is studying very hard. At the checkup, Gregory got two thumbs up.

Truly a reason to jump for joy!

Please visit www.COTAforGregoryR.com and leave the Ramsey family your
own message of encouragement, or make a donation to help with ongoing transplant-related expenses.

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Transplants Today

In Pediatric Intestinal Transplantation, Children with Volvulus
Have the Best Outcomes

Survival after pediatric intestinal transplantation seems to be related to the indication for transplant, according to researchers who analyzed data from the United Network for Organ Sharing (UNOS). The study, the largest ever of pediatric intestinal transplants, found that children with volvulus have higher survival rates than those with other conditions.

"Intestinal transplant is increasingly being used to treat children with intestinal failure," reported Oliver B. Lao, MD, from the University of Washington, Seattle, and his colleagues. The researchers noted that in the past decade, referrals for pediatric intestinal transplantation have doubled.

But, the authors add, "the survival rates after pediatric intestinal transplant according to underlying disease are unknown."

To investigate, they used UNOS data to identify 852 children who received intestinal transplants between January 1991 and May 2008. The median age and weight at transplant were 1 year and 10.7 kg, according to the report published in the March 2010 issue of Pediatrics. Simultaneous liver transplantation was done in 69% of cases.

The most common underlying disorder was gastroschisis (24%), followed by functional bowel problems (16%), necrotizing enterocolitis (15%), volvulus (14%) and Hirschsprung disease (7%). Other indications were seen in 19%. Overall actuarial survival rates at 1, 3 and 5 years were 73%, 61% and 55%, respectively. At all three of those points, volvulus patients had the highest survival rates: 82%, 79% and 73%.

On multivariate analysis, with gastroschisis as the referent, the hazard ratios for
mortality were 0.46 with transplantation for volvulus, 0.81 for Hirschsprung's disease,
0.91 for functional bowel problems, 1.14 for short-gut syndrome, and 1.25 for
necrotizing enterocolitis.

"Future research should identify what factors (preexisting bowel length, length of time on parenteral nutrition, degree of liver dysfunction, or other comorbid conditions) allow certain groups to demonstrate improved outcomes," the authors said. "In doing so, we may be able to improve the outcomes of all children receiving an intestinal transplant.”

Source – www.medscape.com

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Stem Cell, Bone Marrow Transplants Both Benefit Leukemia Patients

The European study began with 329 leukemia patients who received either PBSC or bone marrow transplants from a matched sibling donor between 1995 and 1999. Detailed information was collected on all the patients who survived longer than three years after their transplant.

Ten (10) years after transplantation, 49.1% of PBSC recipients and 56.5% of bone marrow transplant recipients were still alive. Chronic graft versus host disease (GVHD) was more common among PBSC transplant patients (73%) than among bone marrow transplant patients (54%); and more PBSC recipients needed immunosuppressive treatment five years after transplantation (26% vs. 12%). But this did not affect the PBSC recipients' general health status or their ability to return to work, the study found.

The researchers also noted a trend toward improved, but not statistically significant, leukemia-free survival, and overall survival after bone marrow transplant in patients with acute leukemias. Among patients with acute lymphoblastic leukemia, 10-year leukemia-free survival probability was 28.3% in the bone marrow transplant group, compared with 13% in the PBSC transplant group.

In patients with acute myeloid leukemia, the rates were 62.3% for bone marrow transplant and 47.1% for PBSC transplant. For patients with chronic myeloid leukemia, the rates were 40.2% for bone marrow transplant and 48.5% for PBSC transplant.

"This update comparing two important stem cell sources did not find differences in survival after 10-year follow-up. However, subgroup analyses did reveal notable differences in survival in patients with acute leukemias between those who received allogeneic blood cells and those who received bone marrow, while no differences were seen in patients with chronic myeloid leukemia,” the researchers wrote.

"Our observations support previous reports that different patient groups might still benefit from transplantation with bone marrow," they concluded.

The study was published online January 31, 2010, in The Lancet Oncology.

Source – www.sciencedaily.com

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COTA News

Scholarship Available for Transplant Recipients

COTA has learned of a great opportunity for your college-bound (or an accredited trade school) heart, kidney and liver transplant patients. The Astellas Transplant Scholars Award program is offering five, $5000 scholarships to heart, kidney and liver transplant recipients who take Prograf^® or to organ donors who donated a portion of their liver or a kidney.

To learn more about the application and selection process, click here.

We look forward to hearing from you, and we look forward to helping make your families’ road to transplant a little easier. COTA’s staff is just a phone call or an
email away.

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COTA Fast Fact

The Children's Organ Transplant Association (COTA) provides:
Funds Available for Transplant-Related Expenses
Funds raised through the Children’s Organ Transplant Association in honor of patients are available for ongoing transplant-related expenses that include transportation, lodging, and food for follow-up transplant center visits; medications; co-pays and deductibles; and medical care. COTA funds are also available for post-transplant care.

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