August 1st is National Minority Donor Awareness Day … One COTA Teen is Celebrating His Second Chance at Life
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Kim Carter Parker (217.494.6110)
Bloomington, Indiana – July 26, 2011 – August 1st is National Minority Donor Awareness Day -- a day the Yara Family of Virginia Beach, Virginia, will be celebrating with joy and gratitude. If a suitable donor match had not become available for teenager Daniel, it is possible this student would not be going back to school this month.
Daniel Yara is a survivor. Throughout his long transplant journey Daniel kept a smile on his face -- even on bad days. Early in life, Daniel was diagnosed with Dyskeratosis Congenital (DC), which is a rare genetic disease that affects literally only one in a million people. Daniel is the youngest of four children and he is the only family member affected by this horrible disease. Daniel’s first major battle against DC occurred in March 2000 when he was diagnosed with Aplastic Anemia, which required that he receive a bone marrow transplant. Fortunately his brother was a match and was the donor.
Then, in January 2007, Daniel developed pneumonia and never fully recovered. Nine months later, his parents received more devastating news -- a diagnosis of Pulmonary Fibrosis and recommendation that a double lung transplant be performed. Daniel’s health deteriorated quickly. He had difficulty breathing and required supplemental oxygen around the clock. No longer able to walk on his own, he had to be pushed in a wheel chair most of the time. The transplant team at St. Louis Children’s Hospital accepted Daniel as a transplant patient and he was listed for a lung transplant in December 2008.
During the days spent at in St. Louis, hundreds of miles from their Virginia home, the Yara family learned about the Children’s Organ Transplant Association (COTA). “We never really thought about how we were going to pay for everything and once we had to move to St. Louis for an extended period, we did not know where to turn to for help. Our transplant center social worker talked to us about possible choices for fundraising assistance and we were given several organizations’ brochures. Of all the organizations, we were touched by COTA’s message of hope … what COTA does … and what COTA stands for.”
According to Michael, “COTA gave us hope regarding our financial situation. Once we started on Daniel’s transplant journey we discovered there were so many expenses we never considered like relocating to the transplant center, loss of income and all the things insurance does not cover. COTA assured us they could help, and they did.”
While sitting in their St. Louis transplant apartment, the call they were waiting and praying for came on February 11, 2009. During a seven-hour surgery, Daniel received new lungs … and a second chance at life. A mere eight days later, Daniel was doing so well that he was discharged from the hospital to the family’s transplant housing.
“Daniel’s lung transplant was a medical miracle. But to see people coming together to help our family during a time of great need was a people miracle. It has restored my faith in mankind. People we didn’t even know made donations. So many people volunteered to plan events. Our family is very blessed, and very grateful,” said Michael.
Today, Daniel continues to smile and to amaze his doctors. At his first lung transplant anniversary celebration it was very apparent that Daniel is able to fully live life once again.
Daniel’s COTA website (www.COTAforDanielY.com) contained the following message from Daniel’s family in honor of his double lung transplant anniversary:
It has been one year since Daniel’s double lung transplant and the only way we know how to describe it is MIRACULOUS. We are feeling extremely blessed as we celebrate his anniversary and we are extremely grateful to the donor family for their gift of life. When we reflect back and remember all those scary times, moments of uncertainty watching Daniel struggle to breathe with his old lungs, he has come a long way and it truly amazing. Daniel, you never cease to amaze us with your strength and the joy you bring us.
The Children’s Organ Transplant Association 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. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.
For more information about organ donation, or to find a COTA family in your area, please email kim@cota.org.