Family Spotlight

The Best Mother’s Day Gift … A Daughter’s Second Chance At Life

Hayley Resk was born on June 2, 1993. Hayley was a very healthy infant and toddler. However, just after her third birthday she was diagnosed with ulcerative colitis following a prolonged episode of diarrhea and weight loss. At the age of four, Hayley was hospitalized with severe anemia, and by the time she was six, she had her spleen removed to control ongoing anemia. In 1999 Hayley was diagnosed with primary sclerosing cholangitis (PSC) -- a chronic liver disease that causes fibrosis and blockage of the bile ducts. No treatment for PSC exists and Hayley’s parents, Jim and Julie Resk, were told Hayley would eventually need a liver transplant to survive.

As the disease progressed, Hayley was hospitalized numerous times for complications including bleeding from esophageal varices (swollen blood vessels), jaundice, and ascites (fluid in her abdomen). Finally, in December 2006, her transplant team at Lucile Packard Children’s Hospital in Palo Alto, California, placed Hayley on the transplant list.

That’s when Hayley’s parents reached out to the Children’s Organ Transplant Association (COTA) for help. When asked about the impact COTA has had on her family, Julie Resk said, “COTA has meant that our family had an organization working with us – an organization that was willing to guide us through this difficult time in our lives. Everything was scary and all-consuming, and COTA worked with our volunteers to help lift this huge medical and financial burden off our shoulders and make this transplant for our daughter a reality.”

Hayley received a portion of her mother’s liver on February 12, 2007. Now, just a year later, Hayley is doing well; has returned to school, and has resumed most of her normal teenager activities – including hanging with her friends, studying marine biology (her passion) and working to save manatees and our oceans. Recently, Hayley thanked her mom on her website (www.COTAforHayleyR.com) for the liver donation and for giving her second chance at life. Here’s her letter to her mom:

Mom,

I don't know if I will ever be able to repay you for what you have done for me. It's been beyond words what this past year has been like for me, but I am going to try and put my feelings on paper.

It seems like a dream of so long ago when I first remember being told I was going to need a liver transplant. It had been discussed, but never put out there so pointedly. At first, I was like, "Okay … just another surgery, right?” But the doctors said there would be a list – a list that I would have to wait on until a liver that matched mine was available. At that point, it wasn't the surgery, or missing school, or the pain, or the recovery that scared me, it was the wait. I couldn't handle the thought of just waiting (in my head, I was hooked up to wires in the hospital), and waiting. I was told of the nearly 100,000 other people on this list, and my heart ached. I knew their pain. Together, we began waiting for someone to save me – to make that selfless decision to donate life.

And then, like a miracle come true, I remember the day you volunteered to be my donor. You didn't need even a second to think about it. You stepped up at that moment; I knew you were/are the best mom on earth. I wish every person on that “transplant list” could be as lucky as I was. I felt safe knowing you were always there for me – and I just knew your liver was going to work, no doubt about it.

After the transplant, the first time I saw you, I exploded with happiness. I was so happy we had both made it through. Since then, I've learned so much through our experience. You've taught me things without even knowing it. I've learned to never, ever give up, and to stay strong. I now know I am brave. You have taught me to love with the greatest of my ability. I hope we can spend this Mother's Day with a nice walk on the beach to celebrate our mother/daughter bond … a bond that saved my life.

Love, Hayley

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Transplants Today

Antiviral Prophylaxis Curbs CMV After Lung Transplant

Prophylaxis with ganciclovir, or its prodrug valganciclovir, decreases cytomegalovirus (CMV)-related events and bronchiolitis obliterans syndrome after lung transplantation, Swiss and German researchers report in the March 15, 2008, issue of Clinical Infectious Diseases.

Dr. Rudolf Speich of University Hospital, Zurich, and his colleagues note that preliminary findings, which they published in 1999, supported this approach. The current study extends and confirms those results.

The researchers studied 96 lung transplant patients at risk for CMV who were treated prophylactically with ganciclovir or valganciclovir for a mean of about 17 months.

The cumulative incidence of active infection and disease was 27% compared to 75% in eight historic controls and in 274 patients from published studies who did not receive prophylaxis.

Only 11% of the prophylaxis recipients actually experienced CMV disease.

In addition, at five years, there was a significant decrease from 60% to 43% in bronchiolitis obliterans syndrome, and the survival rate of these patients rose from 47% to 73% irrespective of the immunosuppressive regime received. Thus, the investigators conclude, this improvement, "was not attributable to newer immunosuppressive therapies."

In the earlier study, the researchers note, a median prophylaxis duration of 210 days proved to be cost-effective. Whether this is the case with longer prophylaxis, they maintain, "needs to be addressed in the future."

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National Marrow Donor Program and America's Blood Centers Partner to Expand Access to Marrow and Cord Blood Transplants

The National Marrow Donor Program (NMDP) has partnered with America's Blood Centers (ABC), a Washington, DC-based association representing community, independent blood centers, to educate lawmakers about the importance of marrow and cord blood as life-saving treatment options, and about the need to fully fund the nation's cord blood network. Through this partnership, ABC and NMDP will work to:

• educate patients, physicians and families about federal and state policies related to cord blood collection, maintenance and availability.
• collaborate on emerging regulatory issues, standards and accreditation.
• develop new outreach programs to help meet the growing need for marrow and cord blood units from minority donors.
• expand the nationwide network of centers that can collect peripheral blood stem cells (PBSC) from donors matched to recipients in need of a transplant.

This partnership builds on current collaborations between the two organizations. Currently, 39 ABC member centers recruit about 30% of the adult donors listed on the NMDP Registry and more than half of ABC centers perform peripheral blood stem cell collections, many for transplant from unrelated donors coordinated by NMDP. Eight ABC centers also collect and store cord blood units -- many of which are listed on the NMDP Registry.

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COTA News

Transplant Family DVD Now Available from COTA

COTA’s powerful new transplant family DVD was produced specifically for families facing a life-saving transplant. It is intended to address several issues families face when deciding to raise funds to assist with their child’s transplant-related expenses. Families interviewed on COTA’s new DVD share frankly and openly about how they overcame their discomfort in asking their community for help, and why they made the decision to raise funds. One COTA father talks about putting aside his own pride to help his son. A COTA mother talks about the value of a transplant-needy child’s life.

COTA’s new DVD helps explain why fundraising can be beneficial and how COTA successfully works with families facing transplants. To request copies of this new DVD for yourself, your colleagues or your patient families, please contact Jennifer Benson at .

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COTA Fast Fact

The Children’s Organ Transplant Association (COTA) provides Services at No Cost and a Challenge Grant Program. The Children's Organ Transplant Association does not charge for its services -- 100% of funds raised are available for transplant-related expenses. Every fundraising campaign is eligible for up to $10,000 in challenge grant funds in the first year of fundraising. All funds raised for patients are always used for patients.

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