Monday, July 4, 2011
Search on for life-saving kidney
Storm Davis, 12, needs nightly 8-hour dialysis
Cheyenne Storm Davis, a 12-year-old girl who has lived without kidneys since 2008, is in dire need of a transplant from a living donor.
The Franklin County child, who is known to family and friends as Storm, received a kidney on July 2, 2005, from a deceased organ donor.
The kidney lasted almost three years before her body rejected it. Her mother said it was removed Jan. 8, 2008.
Since the rejection, the only daughter of Matt and Julie Davis, has been receiving nightly dialysis treatments, lasting from seven to eight hours. Sometimes it takes as many as 12 hours to complete the dialysis cycle.
During the school year, Storm begins her treatment at 8 p.m. and it's usually completed when she gets up and starts getting ready to catch the bus, said Julie Davis. "During the summer, we start the treatments about an hour later."
The couple has a son, Jason, 14, who will be entering his freshman year at Franklin County High School. He has no health problems.
The family lives in a mobile home on Little Brook Lane, off Grassy Hill Road.
Storm just completed the fifth grade at the Callaway Elementary School and will be entering Benjamin Franklin Middle School this fall.
At her young age, Storm takes 19 different types of medication daily, including injections.
She also has undergone 19 surgeries since 2004, most of them minor.
The parents said their child's problem first started in July 2003, when the iron in her blood count kept dropping. Dr. Rene Vamenta of the Children's Clinic sent her to a specialist in Roanoke. Two days later, in November, she was at the University of Virginia's Medical Center in Charlottesville, her mother said. She was diagnosed with renal dysplasia, a birth defect of her kidneys.
"Doctors told us her kidneys were the size of deformed peanuts," her father explained.
Doctors started Storm on medications and informed the parents it was "just a matter of time" before she would have to go on dialysis. On July, 13, 2004, Storm received her first dialysis. treatment at the age of 4.
Almost a year later, Storm received the transplanted kidney that eventually failed. After it was removed, the long dialysis treatments started once again.
The family has now decided to reach out in search for a live donor, which would give their daughter a better chance of the body accepting the kidney.
Julie Davis said going to the National Kidney Donor Foundation for a possible donor is not feasible because the foundation doesn't maintain an active list.
The UVA Medical Center has Storm's name on the donor search list, but her parents don't believe anyone is going to the hospital looking for someone who needs a kidney.
"Matt and I decided our best hope is to go to the media and spread the word. She needs a kidney. It is as simple as that," her mother added.
The Davis family also needs help. "Realistically, we are living in poverty every day of our lives to make sure Storm is taken care of," Julie Davis said. "We live our lives for her."
The father drives a school bus and will be driving a bus for Phoebe Needles this summer. Julie Davis is not employed.
The family income is approximately $1,600 a month, including $674 Storm receives from SSI after qualifying as disabled.
Much of the living space in the mobile home is used to store a month's supply of Storm's required medications.
Half of the hallway in the home is stacked to the ceiling with cardboard boxes, containing the bags of four different IV fluids used during the nightly dialysis treatment.
Beside Storm's bed is a shelf that contains her dialysis machine along with more medicine.
Storm does her part to help. She has learned how to get the dialysis machine and meds ready, and she can start the treatment herself.
To add to the family's problems, Storm has been battling illness for about four weeks, mainly because she has little or no immune system since her spleen was removed.
"We just found out this week that Storm suffers from curvature of the spine and has an August appointment back in Charlottesville to check that out," Julie Davis said.
Storm has two special dogs, "Powder," an older Chihuahua, and a very active and attentive "CoCo," a Chihuahua mix.
Matt and Julie are just thankful to still have Storm with them. "So many people have been so helpful to us," she said.
In December 2006, Storm and her family were treated to a Disney cruise by the Make-a-Wish Foundation.
"Callaway Elementary School has helped us in so many ways, mentally, physically and financially," she added.
The parents said anyone interested in the possibility of donating a kidney can contact them at any time at 483-2932 or 243-1699.
"I do know Storm has A positive blood, so anyone with O type should match hers," Julie Davis said.
Donations to the family may be sent to Storm Davis at P.O. Box 5, Callaway, Va. 24067.
"We welcome a call from anyone who would consider donating a kidney. A working kidney would change Storm's life forever," Julie Davis said.