Children's Organ Transplant Association

Written by ryan. Posted in Uncategorized

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Published on April 13, 2011 with No Comments

April is Donate Life Month. The Skinner family from Rochester, Minn. will undoubtedly be celebrating this month. Their lives have been forever changed because of a family who chose to donate their child’s organs to save little Claire’s life. And they wait to find out if another selfless act will be necessary to save their son’s life as well.

Jared and Natalie Skinner are very familiar with the road to transplant. They both vividly remember Nov. 14, 2007. The family was eating egg sandwiches and Cheetos with their two-year-old son Benson while Claire, who was two months old, sat in her bouncy seat. Just the day before they had been to the pediatrician for Claire’s well-baby appointment, and were told everything looked great except that she had not gained as much weight as expected. Just to be sure, doctors drew blood. During their lunch, the phone rang and Claire’s doctor said, “Take Claire to the hospital now. Pack your bags quickly. She is in kidney failure.”

Silence was coupled with disbelief. It was an entirely unexpected lunchtime call.

The Skinners spent the next six weeks at The Children’s Hospital in Aurora, Colo., but no one knew why Claire’s kidneys were not working. After initiating dialysis on the tiny infant, they discovered her kidneys were full of oxalate crystals. Diagnosis? Primary Hyperoxaluria – a rare genetic disease where the liver produces too much oxalate and the kidneys fail because they cannot handle the overload. Claire was one of the youngest people ever diagnosed with this disease.

Claire began peritoneal dialysis at two months of age, which was performed by Jared and Natalie every night while she slept. This soon proved to not be enough dialysis for her disease.  At 11 months of age she began hemo dialysis at The Children’s Hospital, six days a week, three hours per day.

As the clock started ticking closer and closer to transplant, Jared and Natalie reached out to the Children’s Organ Transplant Association for help and assistance.

According to Jared and Natalie, “There is so much emotion and stress that accompanies receiving the news that your little one will need a transplant. COTA gave us tremendous hope.”

When Claire had finally gained enough weight to receive a new kidney and liver, the Skinner family moved to Rochester, Minn. and she was placed on the waiting list. Then, 95 days later, “the call” that had been anticipated since she was two months old finally came. Claire received a new kidney, a new liver and a second chance at life at the Mayo Clinic. Her transplant and recovery went well and she was dismissed from the hospital two weeks later.

Unfortunately, Benson was diagnosed with the same illness. It is anticipated that Benson will also need a kidney and liver transplant in the future. His disease has not progressed as quickly as Claire’s, and the Skinners are hopeful he will remain healthy for a period of time.

“Claire is beyond a doubt a walking, talking, dancing, singing, life-loving miracle girl. She continues to benefit from the miracle of medicine and shows us all that even post-transplant, she will keep walking in her miracle ways,” the Skinner’s said.

Claire’s medical journey will continue for the rest of her life. Her first major hurdle has been jumped with brother Benson right beside her the entire way – holding her hand, being the first one to make her laugh and expressing more interest than nearly anyone else about what’s going on with his sister.

The Skinners are forever grateful to the family who gave Claire the ultimate gift – the gift of life.  And they wait and wonder when Benson may need the same gift from yet another family.

COTA is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. Of all funds raised in honor of transplant patients, 100 percent are used for transplant-related expenses.

For more information about organ donation or to find a COTA family in your area, please e-mail kim@cota.org.

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