SEDONA - Carol Golden is organizing and promoting a benefit concert on Sept. 23 for her 14-month-old granddaughter Kinsley Addison Pelletier. Kinsley has been diagnosed with Mitochondrial Disease -- an incurable disease that attacks her Mitochondrial cells -- leaving them unable to convert food into energy.
Golden explained that one in 4,000 babies are born with this disease. But the actual number may be higher. "The United Mitochondrial Disease Foundation estimates that one in 1,000 babies are born with it, but because of the complexity of the disease many babies die before ever getting diagnosed with the disease."
Baby Kinsley's Mitochondrial cells are dying.
"Depending upon which Mitochondrial cells are affected will determine length and quality of life of our beautiful little baby," Golden said.
But finding out which cells are in fact affected isn't easy.
"The way to get this disease properly diagnosed is through genetic testing, and the cost of genetic testing is so expensive," she said.
Add that to all of the doctors that have and are treating Baby Kinsley, the costs of medicines and tests and hospital stays and the total is already way beyond the ability of Kinsley's parents to cover them, and they are climbing rapidly.
In order to stay alive Kinsley must be fed vitamins and supplements through a gastrostomy feeding tube through her skin directly to her stomach. Golden explained that the strict vitamin and supplement regimen, which Kinsley must stay on for the rest of her life, can cost thousands of dollars a month.
Kinsley may never be able to walk, and she cannot be outside. She must stay in a climate-controlled environment at all times. In the last two months, Kinsley has spent more than 30 days in the hospital undergoing extensive testing. Her tiny body weighs slightly more than 12 pounds. She is anemic and no longer has veins good enough to continue testing.
If that isn't enough for a baby girl and her parents to endure, Kinsley suffers from seizures, poor weight growth, a small hole in the top part of her heart, no muscle tone in her legs, and frequent, dangerous infections.
Golden said that insurance will not cover many of the extensive tests required to fully diagnose Kinsley's disease.
Kinsley's dad, Casey Pelletier, graduated from Mingus Union High School and he is a Sedona Police officer. Her mother, Marin Pelletier, graduated from Sedona Red Rock High School. Kinsley has a 3-year-old brother, Landon.
The benefit concert will be held from 4 to 7:30 p.m. at the Sedona Performing Arts Center. Golden said that so far plans include the R.D. Olson Blues Band, the Heavenly J's and Robin Salmon, a guitar player who will perform during the silent auction.
The silent auction, although more items are expected (and welcome) includes an overnight stay with brunch for two at the Enchantment Resort. Also on the silent auction list are Diamondbacks tickets (with terrific seats), another overnight stay at Amara Resort in Sedona, and lots of toys donated by Tlaquepaque Toy Town.
There also will be a raffle, maybe more than one.
"People can just donate if they find it in their heart," Golden said.
To do so, go online to savebabykinsley.com.
Tickets for the benefit concert can be purchased in Sedona at the Mary Fisher box office, Sound Bites at the Hyatt, Goldenstein Gallery in Uptown and the IGA Supermarket in the Village of Oak Creek.
In Cottonwood, tickets may be purchased at Country Bank at 597 E. SR 89A.
Tickets may also be purchased online at savebabykinsley.com.