Overwhelming support shown at fundraiser
By Tony Wheeler Contributing Writer
A benefit for Layla Reeves, daughter of Matt and Nicole Reeves of Franklin, was held at the Coon Hunters Club near the Fairgrounds on Saturday, April 26 at 4 p.m. The event featured hot dog supper plates, a cake auction and a live auction with gift certificates from restaurants, salons, the fitness center, local automotive shops and a weekend home makeover package and local gospel groups singing.
“We are definitely just amazed. We still can’t really believe it. Our little story makes the newspaper and things snowballed from there,” Nicole said. “We are so impressed, so overwhelmed and touched that people cared enough to take time out of their busy weekend to come here and help us,” she said.
Nicole said the news media learned of Baby Layla early in April and the first printed story appeared on April 10.
As the attention increased, WLOS-TV News Channel 13 picked up the story and sent reporter Heather Graf and a crew for a feature spot which aired a few times during evening broadcasts leading up to the event.
Nicole said people started showing up on Saturday before 4 p.m. and by 4:30, the place was packed.
“I was hoping for 100 people,” she said. “This place stayed packed with people coming and leaving until almost 10 p.m. I know we had over 500 hot dogs we sold.”
Matt and Nicole’s first child, daughter Kaitlyn, was born seven weeks early with a seizure disorder and some brain damage. She is now three years old, attending the Macon Program for Progress Head Start and is receiving speech, physical, and occupational therapy and early intervention in order to correct some of the problems before she reaches kindergarten.
Layla was born nearly six months ago in even more dire need of help. She required surgery the day after she was born for a rare disorder that affects one in 100,000 births. Layla wears a colostomy bag that must be changed every other day and she is on medicine to prevent urinary tract infections. She requires at least two more operations: reconstructive surgery and surgery to close the colostomy. Dr. Eric Walburgh of Mission Memorial in Asheville has referred the family to the Cincinnati Children’s Hospital in Ohio.
The cost of the surgeries is estimated to be up around $108,000 and the Reeves are having trouble getting North Carolina Medicaid to approve Layla going out-of-state for the procedures, which are more complicated and therefore requiring more expertise than most. Therein lies a troubling dilemma for the family – accepting care from doctors in the state who are admittedly less experienced in Layla’s rare condition so that Medicaid will take care of the bill, or get the best possible care in Cincinnati and fret over the financial part, said Kathy Snyder, Layla’s grandmother. “At the very least, we need to know we’ve given Layla the very best opportunity for a good quality of life for the rest of her life,” she said.
It’s all about hope, the grandmother said, and the doctors here aren’t offering any. Medicaid strongly suggested the family consult with three physicians in the state before ever considering other options. Nicole was studying to be a nurse before she had children and has done considerable research on Layla’s health issues.
“It’s not like we’re going into this blind,” Kathy said.
The family has indeed followed the suggestions. Dr. Eric Walburgh of Mission Memorial in Asheville was the first consulted and was the first to recommend the hospital in Ohio. Walburgh said he had done only three of the operations and Layla could be better served by Dr. Pena in Cincinnati. Made aware of the in-state requirement, he suggested a doctor in Winston-Salem. That doctor had done 10 of the operations over the course of a 20-year career and told the family only one of the children had experienced a good quality of life.
“We were very disappointed. He didn’t offer us any hope,” Kathy said.
Next, they consulted Dr. Perez in Charlotte. He had done only five of the procedures and agreed with Walburgh in referring the family out-of-state.
Up next is an appointment for Layla at the Duke University Medical Center in Durham with Dr. Rice on May 14.
“This makes the fourth doctor in North Carolina we’ve seen. There are only 10 in the state who can do the operation and none of them are as qualified as Dr. Pena in Cincinnati. He has done over 400 of the operations and is probably the best doctor to do this surgery. Medicaid will probably want us to see all 10 doctors here and that’s okay, we just hope they understand we want what is best for Layla. This is a oneshot chance for Layla to have control over her bowels and bladder and maybe have children in the future,” Kathy said.
“We thought everything was fine when Layla was first born and then we realized we had another child with medical problems. It’s been a real stress of worrying how we’re going to get to Cincinnati,” Nicole said.
The benefit raised money to help the family with transportation costs and lodging. It was so successful it raised enough to cover those expenses, Kathy said. Nicole said Layla will be in the hospital three or four weeks for the first surgery and they are unsure about the second.
“There will be a lot of traveling. We wanted to stay at the Ronald McDonald House near the hospital but they can’t guarantee space outside 24 hours and we don’t know if we can get our schedule that close,” she said.
Nicole’s parents, Rick and Kathy Snyder, will be among the family members traveling back and forth to provide emotional support and will also take care of Kaitlyn for the Reeves.
“Matt and Nicole don’t have insurance and Matt won’t be paid for the time he’s away from work. The money the benefit raised will not only take care of the expenses of being away, it will actually keep them from missing a mortgage payment and ensure they have a home to come back to,” Kathy said.
The benefit was organized by Rose Creek Baptist Church and its members. Without support from the Coon Hunters Club, Bi-Lo, Ingles and the community, this would have never happened, Kathy said. If you missed the benefit, it is not too late to help the family. Donations can still be made to the Layla Reeves account at Macon Bank. Plans are in the works for a yard sale in Franklin and a benefit hosted by friends of the family in Waynesville. Call the Reeves at 828-332-8538 for more information.
“We know that Cincinnati is going to be Layla’s best chance. I want her to have the best care possible. I don't know what Matt and Nicole would’ve done without North Carolina Medicaid being there for Layla and Kaitlyn. But North Carolina Medicaid needs to understand how important this surgery is for Layla’s future,” Kathy said.