April 2009 update on the children PEACE have helped

We start this update with a reminder as to just how much the fund donated mean in the words of the President of COTA Rick Lofgren himself.

"One of the things I always try to note with these updates with is that some of our families subsist with incomes below the federal poverty level. With that, a $500 mortgage or rent payment may be such an insurmountable obstacle that it completely throws the family unit into chaos, so your $3,000 - $5,000 grants to each of these families makes a significant difference in their lives."

Rick Lofgren, CFRE President, Children's Organ Transplant Association

Since preparing this page we have received an update on Victoria Roberts. Her father, Chuck, sent COTA an email late last week saying that Victoria had her transplant in Seattle and is battling “graft vs. host disease” or GVHD. GVHD is a chronic condition many bone marrow/cord blood patients experience where their body (the “host” in the name) tries to kill the good cells as they graft to the bone marrow in her body. It is a difficult situation on a number of levels, but one that can be controlled with aggressive treatment if caught early enough. Please say a prayer for her as this is a life-threatening situation.

LOGAN BIERLEIN-TYLER Logan is doing well, but according to his mom, Helen, a MRI and additional tests results showed that Logan has Double Cortex Syndrome with Missense Mutation.This diagnosis is very rare in males, and means that his brain did not form completely. This has nothing to do with the transplant, and in fact, Logan is doing very well from the kidney transplant with no signs of rejection. Doctors say if he doesn’t walk by age 5, he never will. The neurologist has him in physical therapy twice each week, as well as speech therapy and swim therapy.

Logan is now able to attend pre-school, and his mom is able to work part-time again to help the family with living expenses. Thanks in large part to your grant, the family and volunteers have raised a total of $11,333.

EASTON BLANCHARD

Easton had his life-saving small bowel transplant at Children’s Hospital of Pittsburgh on June 30, 2008, and I met with his social worker this past March and she said he is doing “great” following the transplant. His volunteers met his goal of $35,000, but Easton’s family had some local issues unrelated to COTA, and we removed their website so as not to cause them (or us) any additional problems. Easton has a number of developmental issues that were not a result of his transplant, but prevent him from attending school currently.

VICTORIA ROBERTS

Chuck (dad) contacted our office recently and we learned that Victoria’s cancer has returned, and she has been hospitalized in Seattle for several months. The good news is that her parents had a second child (Jack) in 2008, and they “banked” his cord blood, so they may be able to use this for her transplant. The campaign volunteers raised nearly $360,000 and have spent less than $60,000 of that total for normal medical and travel expenses. Victoria’s family also began working with us before we began websites for every patient, so there is not one here for her.

SOPHIA BOYER

Sophia was successfully transplanted on Christmas Eve 2006 and has had some significant recent problems this year. Her father recently wrote me that they are being told that she has stabilized, but may still need another transplant in the future. Additionally, her younger sister, Tatum, was diagnosed with the same disease and will now also require a transplant, and her condition has actually deteriorated much more rapidly than Sophia.

Her fundraising concluded and they raised a little over $35,000, including your gift and our challenge grant. Following this recent scare, the family’s volunteers have begun fundraising on a small scale but we are unable to assist further (they exhausted all COTA funds) as their medical bills are now being fully covered by Oregon Medicaid, and they need help with expenses that we cannot cover, i.e., missed mortgage payments unrelated to their transplant, and more with the declining economy.

	VALERY HUTTNER Valery, now nearly 18 months post-transplant, is a two-year-old child from West Columbia, South Carolina, who was successfully transplanted at Children’s Memorial Hospital in Chicago. The Huttner family is home and Valery continues to make great progress. Combined with your grant, their volunteers have raised more than $11,000 since they began.

ELLISE JONES

We have not had regular contact with the family, other than to pay expenses on a nearly monthly basis, which is always a good sign. When things do not go well, we will hear a lot from families and that is the point where I know things are not going well. Ellise’s volunteers raised nearly $30,000 and her family began working with us before we began websites for every patient, so there is not one here for her, and they have not been interested in having one at this point.

JOSHUA RAY Joshua is a two-year-old child from Smithfield, North Carolina who had his life-saving liver transplant at Duke University Medical Center in Durham, North Carolina on September 10, 2007. His volunteers raised more than $25,000, but he continues to experience health issues.

NICKOLAS SHEEDER

Nickolas’s family moved from Texas to Colorado last year due to his dad’s work situation. They concluded fundraising with just under $11,000, and are very pleased with their success – thanks in large part to the PEACE Fund. Nickolas’ family began working with us before we began websites for every patient, so there is not one here for him and they also declined our offer to provide a website.

ELIJAH VANG

Nothing new since last April when Elijah’s mom said he was to return to school and was a “normal kid” -- just what we hope happens with all our children. His campaign volunteers raised more than $16,000 for his care. Elijah’s family began working with us before we began websites for every patient, so there is not one for him and they also declined our offer to provide a website.