Celebrating the New Year

First, let me extend my wishes to everyone for a prosperous, healthy and extremely happy New Year!

It is my hope that 2008 brings additional growth in the health care community with additional health initiatives and partnerships with the IAOD. As always it is our desire to increase knowledge and understanding about organ donation and transplantation. We look forward to increasing our presence in the community and making a difference in the lives of many.

IAOD Parternships

The DTE Quest for Life Campaign is a success!

David Meador, Vice President and Chief Financial Officer to receive the Corporate Benefactor award on behalf of DTE Energy for their participation in the Quest for Life Campaign.

During the month of October DTE Energy launched the Quest for Life campaign with a letter and registration card from Dave Meador, Executive Vice President and Chief Financial Officer along with Vice President and Chief Tax Officer JoAnn Chavez to their employees and retirees. In addition, the organization added a Quest page to their employee website which links to the IAOD website, they also published a cover story in their Connections employee newsletter with many other initiatives to follow thru 2008, designed to build organ donor awareness and registration. Within an 8 week period over 200 registrations have been signed from this campaign, (scheduled to run through 2008). To launch a campaign at your organization contact LaVonne Turner at (313) 745-2235 or email lturner@dmc.org.

9th Annual “For Our Children” Organ Donation and Transplantation Gala

The IAOD is proud to announce Robert A. Lutz, Chairman, Global Product Development, General Motors Corporation as the keynote speaker for the 9th Annual “For Our Children” Organ Donation and Transplantation Gala with Master of Ceremony, Lila Lazarus. The Gala will celebrate the gift of life shared by many children and their families.

The leading Michigan hospital’s providing transplant services to children will be participating on the committee for the event: Children’s Hospital of Michigan, Helen DeVos Children’s Hospital, and University of Michigan along with some of the major corporations serving the community: AT & T, BCBSM, Comcast Cable, DTE Energy, and General Motors. Honorary Committee Members: Tony Armada President & CEO Henry Ford Health Network, Gregory Clark, Vice President, External Affairs AT & T, Roderick D. Gillum, Vice President, Corporate Responsibility & Diversity, Herman Gray, President, Children’s Hospital of Michigan.

Celebrating our Children

Organ Donation is non-discriminating--this year the IAOD will be featuring some of the many families affected by various diseases and illnesses attributed to the need for organ transplants in children. When you think of organ donation rearly do you think of children being in a situation where they would need an organ transplant. This year the IAOD is committed to bringing stories to you about some of the families dealing with the ordeal of organ transplantation as well as the wait. Many families are tramatized by the health issues, costs, time and mental strain.

A Mother's Love

Lili Whitiker and Mother, Julie Newland

Lili is a 4 year old, born with only one small kidney. Her kidney was failing before she was born and her parents were told that she would probably die a few hours after birth. After birth she did surprisingly well and was sent home. Her parents were told to expect her to die of renal failure in about a week so they took her to the University of Michigan at 5 days of age for treatment.

"In January 2003, I found out that the baby I had been carrying for 6 months was not going to live. She had no kidneys and her amniotic fluid was almost non-existent. We met Lili on April 6, 2003. She came out screaming and confused everyone! The medical team examined her and advised us to either take her home and call Hospice or take her to University of Michigan for dialysis and a transplant. We were confused, scared, and we eventually took her to University of Michigan. We stayed there for 2 months, in which time she had several surgeries and started peritoneal dialysis. After only 2 months on dialysis, she had bilateral inguinal hernia surgery and she was taken off of dialysis to heal. Lili never had to go back on dialysis, which was another surprise for the medical team. Her peanut kidney, as we called it, was working along with her diet and medications to keep her levels stable enough right up until transplant. Lili received my kidney on June 7, 2004."

Looks can be Deceiving

Ajai Shaw

Ajai Shaw is a beautiful 9 year old with a wonderful personality. Just looking at her you would never know how sick she is. In March of 2003, she was diagnosed with nephrotic syndrome/FSGS-focal segmented glomerular sclerosis and in May of 2007 she was placed on peritoneal dialysis. She is in the process of being added to the wait list at Children's Hospital of Michigan.

"Ajai was starting pre-school and went in for a yearly physical, something I made sure my children always received. When I found out my daughter had this illness I was very angry in the beginning, wanting to know why and how?? The past year has totally changed our lives. Ajai has recently started peritoneal dialysis and is being worked up for a kidney transplant. We have battled several infections, anemia, high blood pressure, strict dietary restrictions and an ever changing medication regimen (especially for a 9 year old). With all that, the hardest thing I seem to deal with is keeping Ajai positive with a fighting spirit, but all she continually talks about is, "I just want to be normal, go to the sleepovers, eat pizza, chips and ice cream with my friends." I smile, hug and kiss her and tell her YOU ARE NORMAL!! You are a normal little girl with special needs."

Life is Good

Hannah Milavec

Diagnosed with renal dysplasia, Hannah underwent a living related donor transplant from her father at 22 months of age. Her parents and she have been meticulous in maintaining her health. It has been 15 years since her transplant and she is still doing very well. Hannah is graduating this year and will be going into nursing.

"The strength these children show cannot be measured. Meds and doctor visits and growth issues and having to be careful about coming in contact with infections due to immuno suppression. I know that they live each day with trials, but they keep going with grace. I am so proud to be Hannah's mother and I am so thankful for everyday I can spend with my daughter. She is graduating High School this year and every mile stone is huge to us." We love Children's Hospital and the doctors and nurses there,they are our family. Thank you for letting us tell her story she is a miracle."

Marissa Freyling

Blessings from a Stranger

Marissa underwent a kidney transplant that was donated from a woman living in California who had originally donated her bone marrow. The donor had gotten to know the family after the bone marrow transplant, then after Marissa's health deteriorated to the point of being put on hemo dialysis, the donor flew back to Michigan once again to help Marissa in her time of need to donate one of her kidneys.

"I never would have imagined that I would be in need of a solid organ transplant. But now that I have had a kidney transplant, it makes a world of a difference from before when I was in need of one. I remember sitting in a hospital room and my doctor coming in and saying that I will be starting dialysis soon. I had been having trouble getting rid of fluids, dealing with some high blood pressure, and having a dangerously high potassium level.

I was put on dialysis in the fall of 04 while waiting for a kidney transplant. Dialysis was very tough on me. I was limited to about 30 ounces of any kind of fluid and had to stay away from salty foods. I was on dialysis a total of about 9 months, until we found a donor. Actually the donor found me. Previously I had a bone marrow transplant in the summer of 03. And my unrelated donor, Celeste, contacted my doctors and said that she was willing to give me her kidney, since we now share the same DNA. Celeste flew here to California with her family and selflessly gave me her kidney on August 30 of 2005. I feel so blessed that someone I didn't even know would willingly give me a second chance at life. I am forever grateful for her and what she sacrificed for me. I thank God for her everyday, because of what she has done, I am still here."

In the News

Transplant Patient Makes Medical History

According to Reuters, Jan. 25, 2006 - An Australian teenage girl has become the world's first known transplant patient to change blood groups and take on the immune system of her organ donor, doctors said on Friday, calling her a "one-in-six-billion miracle." To read more Click Here

Surgeons Remove Large Tumor, Transplant Bowel Back Into Patient

According to Medical News Today.Com, Jan. 19, 2008 - Surgeons at the University of Illinois Medical Center at Chicago removed an 11-pound desmoid tumor from the abdominal cavity of an Arkansas man and performed a transplant using a segment of his own small intestine rescued during surgery, preserving his ability to eat and digest food. "The tumor had me feeling so ill that I couldn't eat, I had no energy -- I was about to die," said William Crook, a former construction worker who lives in Alexander, Ark.

A desmoid tumor is an aggressive soft tissue tumor that often invades and destroys surrounding healthy tissue and organs. Although the tumors do not metastasize, they can be life-threatening.

Crook, 61, suffers from Gardner's syndrome, a genetic disorder that can cause multiple polyps and desmoid tumors.To read more Click Here


Federal officials investigate tainted transplants: at issue is what hospitals knew and told four patients about a high-risk donor.

According to the Associate Press, Jan. 19, 2008, CHICAGO - Federal officials are investigating what three hospitals knew and told four organ transplant patients about a high-risk donor who infected them with HIV and hepatitis _ the first known instance of HIV transmission through organ transplants in the U.S. since 1986. To read more Click Here


Blacks less likely than whites to get implantable cardioverter-defibrillators

According to Reuters Health Information, Oct. 30, 2007, NEW YORK - There appears to be considerable racial disparity in the use of implantable cardioverter-defibrillators (ICDs) in patients with prior myocardial infarction. Whites are more likely to get these devices than are blacks, according to researchers at Duke University Medical Center, Durham, North Carolina. To read more Click Here

Transplant-related issues and adolescents

The need for an organ transplant is difficult to understand, accept, and cope with for anyone. The emotional and psychological stress impacts all family members.

For children who are developing the ability to think in new ways and explore new thoughts, the idea of facing transplantation stimulates thoughts, concerns, and questions about their bodies, their relationships, and their lives.

Important factors in helping children cope effectively with a transplantation experience include the following:

• Be honest with your child about his/her illness and his/her healthcare needs.
• Include your child in discussions and decision-making related to the need for transplantation, the benefits, and the risks involved. This is very important to helping him/her cope with the process and life after transplant.
• Supportive communication is vital. Encourage your child to ask questions and express his/her fears and feelings about how this affects his/her life.
• Concerns about death and the possibility of dying are difficult to talk about. However, it is important to address this topic with adolescents in any life-threatening situation.
• Encourage hopefulness.
• Encourage humor, as it helps to reduce stress.
• Encourage friends to visit your teen in the hospital, when possible.
• Enlist the help of mental health professionals in addressing fears, feelings, and behaviors that are problematic for your child, or for other family members.