The fundraiser, called “Celebrity Waiter Night,” will include food, fun and fellowship as well as entertainment, a four-course meal prepared by Chestnut Hill Estate Catering and items to be raffled which were donated by area businesses.
Shafer, the infant son of Kevin and Dr. Jada Daves, was born with a very rare medical condition called Denys-Drash Syndrome, of which there have been approximately 200 cases diagnosed worldwide. It includes chronic kidney disease leading to kidney failure by age 3 and kidney cancer, known as Wilms’ Tumor, along with other difficulties.
Jada’s Polk County High School graduating class of 1988 will be sponsoring the benefit to assist with her son’s medical expenses. Daves said she is hoping to be the living donor for her son’s kidney transplant. He has already had two major surgeries, with more surgeries ahead.
Although the initial diagnosis gave the Daves family very little hope, Jada and Kevin said “The Lord has touched Shafer to provide hope and healing time and time again.”
“Prayer has been a huge key to Shafer’s healing thus far. We literally have people praying for him all over the world,” she said. “We have seen the results of James 5:16 in the life of our son which states, ‘The prayer of a righteous man is powerful and effective.’ We are asking for more prayers as we travel this challenging journey.”
Dr. Jada Daves, president and founder of Positive Results, said Shafer continues to amaze his doctors with his overall health and developmental milestones. Even though his labs vary, he is currently holding steady at 40 to 50 percent kidney function. The child has scans every three months at Vanderbilt Children’s Hospital to look for the presentation of the Wilms’ Tumor.
The Daves’ have five children. Shafer will celebrate his first birthday Oct. 15. Shayli recently turned 9, Sharayah will soon be 7, Shanel is 4 and Shaw is 3.
“One of the hardest parts of this journey has been trying to balance time with the other children, since Shafer has required so much special attention,” she said. “Especially when he has been hospitalized, it has been difficult for the children to say goodbye to Mommy and Daddy. My heart was torn for days on end as I wept bedside for my son in Pediatric ICU.
“Then to leave and go to an empty hospital room to take a nap and talk to the kids for a moment on the phone to catch up on their day or say bedtime prayers. There were tears on both ends — for my critically ill son and for my children at home that I missed dearly.”
The couple said the support and encouragement received from family, friends, church members, casual acquaintances and pure strangers has been nothing short of “supernatural.”
“God has met our every need and in many cases, went before us to provide the resources needed days or weeks ahead,” she said. “Being a recipient of this kind of love and generosity will strengthen your faith. It makes you see the world in a whole new way.”
Jada and Kevin praised their local pediatrician, the medical team and staff at Vanderbilt University Children’s Hospital in Nashville, and T.C. Thompson’s Children’s Hospital in Chattanooga for their diligence, vigilance, and encouragement.
“It’s amazing how the right words spoken at the right moment can transform a life,” she added. “I remember a particularly difficult day when I just couldn’t make sense of the situation in which we found ourselves. As the doctors made their rounds and came in the Pediatric ICU, Dr. Talbot said to me, ‘God gives special babies to special families.’
“It was as if a light bulb came on and I realized that we had been chosen to care for baby Shafer. This was an incredible turning point for me as I embraced the gift we had been given instead of grieving what we had lost.”
Shafer is now in his 11th month of his fight for life while family and friends are doing all they can to raise funds for his upcoming surgeries and medical expenses.
Medical treatment of Denys-Drash syndrome includes management of kidney function, high blood pressure and complications from kidney disease. Surgery is used to remove Wilms tumor. Often both diseased kidneys are removed. The affected child would then need dialysis and, ultimately, kidney transplants.
“No one can prepare you for a journey like this,” said Daves. “I’m a type-A all-the-way planner. Having to step back and live one day at a time has definitely been a challenge. But this new way of living on ‘daily bread’ comes with some benefits.
“Even though we are an extremely close family, this has made us appreciate each day, each experience and each moment even more. We fully embrace each other in a deeper, more meaningful way of which I did not even know was possible.”
The couple attributes their strong faith in God as the key to their survival as a united family, accepting His will in the most difficult of times.
“My husband reminds me daily that we are going to make it and that God will never leave or forsake us. Kevin’s strong faith and leadership have kept our family united despite the pressing demands that come with a sick child.”
Family and friends are asking for community support on behalf of Shafer. Tickets for the fundraiser are $35 and must be purchased in advance from one of the local “celebrities” who will be waiters for that night or from Jackie Lindner at 423-715-4704.
Donations, can be made directly into the Shafer Daves savings account at any First Volunteer Bank by using account number 104638304.