Children’s Organ Transplant Association

http://cota.org/

Updates

• April 2010 - An Update from COTA

  Published on April 1st, 2010

  Here is an update on these children that The PEACE Fund has helped in the past:

  Joshua Ray

  Joshua is a three-year-old toddler from Smithfield, North Carolina who had his life-saving liver transplant at Duke University Children’s Hospital in Durham, North Carolina on September 10, 2007.
  

  His volunteers have now raised more than $17,000 for transplant expenses.

  We have not heard a lot from the family recently, but we often know that in a case like this, no news can be good news!

  Easton Blanchard

  Easton had his life-saving small bowel transplant at Children’s Hospital of Pittsburgh on June 30, 2008. His volunteers nearly met his goal of $35,000. Easton’s family had some local issues unrelated to COTA, and we removed their website so as not to cause them any additional problems. A case where a lot of what goes on in local communities is beyond our control, but be assured they are accessing funds in an appropriate fashion, and there is no concern that anything related to COTA is being mis-used or any unethical/illegal issues are taking place.

  Logan Beirlien-Tyler
  

  After a successful kidney transplant in November of 2007, Logan had been progressing with no signs of rejection. Though he struggled with other developmental issues, he was able to attend pre-school.

  This past September found the Tyler’s at the hospital for nine days with complications but are grateful for his eventual recovery.

  Thanks in large part to your grant, the family and volunteers have raised a total of $10,833.

  Calvin Blevins

  Young Calvin Blevins of Durham, North Carolina, had a successful bone marrow transplant in June of 2008, and returned home to prepare for a “normal” life for an elementary-aged child. His mother, April, has ongoing medical and transplant-related expenses for Calvin, and their campaign fund has been depleted with no more than $761.84 of the $25,053 originally raised remaining.

  Sophia Boyer
  

  Sophia was successfully transplanted on Christmas Eve 2006 and was doing well until she experienced significant health issues in 2009. Additionally, her younger sister, Tatum, was diagnosed with the same disease and will now also require a transplant. Her fundraising concluded in 2008, and they raised a little over $34,000, including the PEACE Fund grant and COTA’s challenge grant. Following this recent scare, the family’s volunteers have begun fundraising on a small scale “on their own” and have decided they no longer wish to work with COTA. They have all but exhausted their fund balance with only a small amount remaining for transplant-related expenses.

  Ellise Jones

  Ellise is now in sixth grade and combined with a challenge grant, her volunteers raised nearly $34,000. I spoke with Ellise’s mom in January when she gave a stirring presentation to a group of more than 500 American Legion members in Columbus, Ohio.

  Nickolas Sheeder

  Nickolas’s family moved from Texas to Colorado due to his dad’s work situation. After being transplanted in 2006, they concluded fundraising with just under $11,000, and are very pleased with their success – thanks in large part to the PEACE Fund. Incidentally, their lead volunteer told me they were set to do a number of new fundraisers, but mom and dad felt they were ‘covered’ and asked everyone to stop.
  

  The Sheeder family often speaks with other families at the hospital about how COTA helped them, so they seem to be doing very well and love the services we provide.

  Ray Eldridge

  Infant Josh Eldridge was successfully transplanted on October 5, 2008 and was recovering following his surgery at Jackson Memorial Hospital in Miami, Florida. Unfortunately, in August of 2009, he went into acute organ rejection, and was diagnosed with lymphoma. This November we received the incredibly sad news that Ray had passed. In the midst of their weariness, his parents expressed how grateful they were to the help from COTA and by extension, your organization, during their time of need.

  Skii Summerall
  

  Fourteen-year-old Skii (pronounced “sky”) Summerall received the life-saving gift of a liver transplant at Jackson Memorial Hospital in Miami, Florida this past September.

  According to Skii’s mom, her daughter’s health continues to progress, however she tires very easily and is still awaiting the medical clearance to go back to school.

  The family continues to have transplant-related expenses, with approximately only $9,500 raised of an initial $50,000 goal.

  Elijah Vang
  

  Nothing new since last April when Elijah’s mom said he was to return to school this past fall and was a “normal kid” -- just what we hope happens with all our children.

  We continue to assist the family with medical bills for Elijah.

  His campaign volunteers raised more than $16,000 for his care, and the family has just a little more than $2,000 remaining for his care.

  Kaylee and Wendy Kirkpatrick

  Born on November 4, 2005 and June 7, 2007, sisters Wendy and Kaylee Kirkpatrick of Perryville, Missouri, were diagnosed with Hurler's Syndrome in December 2007. Hurler's syndrome (also called MPS-1H) occurs in about 1 in 100,000 infants.

  Both girls were successfully transplanted in April 2008 and returned to their home in Missouri that fall. Their campaign volunteers have worked to raise just over $28,000 for both girls’ transplant expenses. In an update to us, the girls’ mom, Dessina, said that though Wendy still struggles with effects from Hurlers, both girls are on the road to being “normal kids once again.”

  Victoria Roberts
  

  I met with Chuck Roberts in Seattle in late January and noted that Victoria has had a difficult year, and has been in and out of the hospital for several months.

  The families’ volunteers raised nearly $360,000 and have been accessing funds to meet living and medical expenses while in Seattle.

  Rumor has it that she might be coming home soon – a big relief to the family.

  Valery Huttner
  

  Valery, a three-year-old child from West Columbia, South Carolina, was successfully transplanted at Children’s Memorial Hospital in Chicago.

  Valery continues to make great progress with occasional hospital trips. Combined with your grant, their volunteers have raised more than $11,000. as it that she might be coming home soon – a big relief to the family.

  COTA Update on Wendy and Keylee

  Published on May 3rd, 2009

  We have just received an update from COTA on two of the children The PEACE Fund has helped to support that we would like to pass onto you, as this shows just how important your donations, however large or small are.

  

  In the words of the President of COTA, Rick Logfern himself...

  "Here are two of the sisters you helped earlier this year…sometimes families take a long time to say thank you (our staff gave this family a Christmas package last year), but as you read the note below and see their photo, you will feel a sense of joy that you made a difference for a struggling family!

  It is notes like this that make you stop and realize (especially around Thanksgiving and Christmas) how much your gifts are making a difference in the lives of kids… and how blessed we are to be able to be a part of this work"

  And then the message received from Wendy and Kaylee's mother...

  "I want to say thank you to everyone at COTA. Wendy and Kaylee are becoming "normal" kids once again. Wendy's road was rougher and she still has a few miles to go. While Kalee has finally made it. This was more than our girls being sick. With the bad economy, it was also the survival of our family. Without cota, the girls wouldn't have had a home to come home to. The bank would have taken the house many times over by now if we had only our resources to fall back on.

  Last year, we wouldn't have had a christmas without all of you. (I had bought each child something and planned to spend $20 at the thrift store.) I still tear up just thinking of the day the boxes arrived. Toby finally got his job back, but mine is gone for good. The girls have finally been approved for disability, which was a long hard fought battle. Thank you for showing us how to survive and caring enough to mean it. I know you have spent time with all of the cota families, none of us is just a name. Our children are important to you and it shows....

  Thank you.

  November 2008 Update on the Children The PEACE Fund Has Helped

  Published on November 1st, 2008

  Valery Huttner

  Valery, now nearly 12 months post-transplant, is a 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 The PEACE Fund grant, their volunteers began raising funds, and have raised more than $11,000 since they began.

  The PEACE Fund grant helped spur their volunteers on to do more for her benefit.

  Victoria Roberts

  Jackie Tate spoke with Chuck (dad) again in late June and noted that Victoria enjoyed a full year as a “normal kid”, and that her success in school is borne out by straight ‘A’ grades in the third grade after only getting part of kindergarten under her belt before all of this started. Chuck noted, “Her blood counts are still really low and have not normalized, but we continue on in our faith. As far as she knows she has been healed. The good news is she hasn't needed blood in over two years and continues to have an unbelievable attitude towards life.

  Thanks for asking and please continue to pray for her.” The families volunteers raised nearly $360,000 and have spent less than $22,000 of that total for normal medical and travel expenses as they live three hours from the hospital where she is seen regularly. Victoria’s family began working with COTA before we began websites for every patient, so there is not one here for her.

  Ellise Jones

  We have not had any real 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 is now in fifth grade and her volunteers raised nearly $29,000 and they have a balance of nearly $15,000. Ellise’s family began working with us before we began websites for every patient, so there is not one here for her.

  Joshua Ray

  Joshua (pictured right) is a two-year-old baby 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 have stepped up again and have now raised more than $25,000 and his family still has significant bills following his successful transplant.

  Sophia Boyer
  

  Sophia was successfully transplanted on Christmas Eve 2006 and was doing well until recent problems this year have caused significant health issues. Additionally, her younger sister, Tatum, was diagnosed with the same disease and will now also require a transplant. Her fundraising concluded last summer, and they raised a little over $34,000, including your gift and our challenge grant.

  Following this recent scare, the family’s volunteers began fundraising on a small scale just in case it may be needed in the near future. We are trying to work with them, but have recently been told that they are doing things “on their own” and have decided they no longer need to work with us even though we still have $16,000 remaining to help them out. My intuition is that they need help with expenses that we cannot cover, i.e., missed mortgage payments unrelated to their transplant.

  Logan Beirlien-Tyler

  Logan is doing very well, but according to his mom, Helen, a recent MRI showed that his brain didn’t form completely (while in the womb) causing gray matter resulting in delays for walking/talking, etc. 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. 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. 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 The PEACE Fund grant, the family and volunteers have raised a total of $10,333.

  Nickolas Sheeder

  Nickolas’s family moved from Texas to Colorado 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.

  Incidentally, their lead volunteer told me they were set to do a number of new fundraisers, but mom and dad felt they were ‘covered’ and asked everyone to stop. I actually met with their social worker in New York on a recent trip and she told me the family often speaks with other families at the hospital about how COTA helped them, so they seem to be doing very well and love the services we provide. Nickolas’ family began working with us before we began websites for every patient, so there is not one here for him.

  Autumn 2007 Update

  Published on August 1st, 2007

  Victoria Roberts

  A COTA staff member spoke with Victoria's dad in April. Victoria’s numbers keep getting better and better and they are still hopeful that someday they’ll be able to give this money (nearly $360,000 raised) to another child. They welcomed their third child to the family in May.

  Elijah Vang

  Nothing new since April (which, in this case, is always a good thing). Elijah’s mom said he was to return to school this fall as a first grader and is a “normal kid” - just what we hope happens with all our children. His campaign volunteers raised more than $16,000 for his care.

  Ellise Jones

  A COTA staff member spoke with Ellise’s mom back in June after Ellise was successfully transplanted. COTA worked on a couple of minor issues for her that kept her at the hospital in Cincinnati for a extended period (more than a month). For now, all seems quiet (a very good thing!) at the Jones home, and Ellise should be starting back to school in the fourth grade now. Ellise’s volunteers raised nearly $29,000.

  Nickolas Sheeder

  Nickolas’s family moved from Texas to Colorado due to his dad’s work situation earlier this year. They concluded fundraising (less than $7,500) and are very pleased with their success – thanks in large part to the PEACE Fund. Incidentally, their lead volunteer told me they were set to do a number of new fundraisers, but mom and dad felt they were covered and asked everyone to stop.

  Sophia Boyer

  Sophia was successfully transplanted on Christmas Eve 2006 and is doing well, according to her mom. A COTA staff member spoke with her grandmother (and campaign coordinator) in the spring; she said Sophia was doing very well with an occasional bump in the road, but nothing “earth shattering.” Her fundraising has concluded and they raised a little over $31,000, including The PEACE Fund's gift and COTA's challenge grant.

  Cadence

  Rigden Sadly, Cadence passed away the latter part of March. COTA has tried to remain in contact with her mother, who is a very young woman and help her with funeral costs and getting her back on her feet again. At the time of Cadence's passing, volunteers were still raising funds and were able to help with nearly $15,000 for the family.

  

  Ellise welcomes a bear at Christmas

  "Thank you so much for the gift. She was so excited when she received it. Of course I made her wait until Christmas to open it, which was probably a week or more. She could hardly stand the wait. She loves stuffed animals and she has a huge window seat full of them so the new bear fit right in.
  

  Thanks again and I hope you had a wonderful holiday!"

  

  Sophia and her new friend

  Thanks to the generosity of one of The PEACE Fund's anonymous supporters, some of the COTA children who have received support from The PEACE Fund also received an early Christmas gift - a bear made especially for them from the Vermont Teddy Bear Company.

  
  

  

  Elijah and his bear

  We were touched to receive a letter from Elijah's family, which we would like to share with you.

  "Hi, I am the parent of Elijah Vang, one of COTA'S kids. We recently received a gift from you for Elijah. I would like to say Thank You for your generosity and wonderful gift you sent for Elijah. He took the bear with him to school to show his teacher. He was very excited about receiving the gift. Thank you for making Elijah's Christmas bright this year and for caring about COTA children. Attached is a photo of Elijah holding the teddy bear. Elijah is 2 years post transplant and is doing well so far. I thank God for answering all my prayers. Thanks again for the beautiful gift."