Area baby diagnosed with rare disease
Fundraiser set for March 24 to assist with medical costs
BUCKHANNON — Baby Charlotte is not yet 4 months and has already been diagnosed with a rare disease that affects 1 in 15,000 people worldwide. The disease is known as salt-wasting congenital adrenal hyperplasia.
Charlotte, the youngest daughter to Natasha and Justin Davis of Rock Cave, was diagnosed with salt-wasting congenital adrenal hyperplasia (CAH), after going into adrenal crisis at just 3 weeks old.
CAH is a group of inherited genetic disorders that affect the adrenal glands, a pair of walnut-sized organs above the kidneys. A person with CAH lacks one of the enzymes the adrenal glands use to produce hormones that help regulate the body’s response to stress, the immune system, blood pressure, sodium and potassium levels and other essential functions of the body.
In order for Charlotte’s body to function normally, she takes steroids, salt supplements and blood medications multiple times a day, which she will need to do for the rest of her life.
And in case she becomes unresponsive because of dehydration, her parents must carry emergency medication to inject into her leg. The injection is an emergency steroid used to help Charlotte’s body produce the needed hormones to help get her through the trauma.
Natasha Davis explained that since CAH affects the immune system, the smallest cold can put Charlotte into the hospital, noting that those who are sick or have been around sick people cannot be around Charlotte.
“She’s going to be facing this for the rest of her life,” her mother said. “There’s no cure. We can only pretty much manage her symptoms basically.”
Through Charlotte’s medical journey, Natasha Davis said her faith has become stronger.
“Me and my husband have definitely prayed more than we’ve ever prayed before with all of this,” she said. “And we’ve built more relationships with local pastors that have reached out, local church families — it’s definitely grown our faith.”
Since Charlotte’s birthday, Nov. 15, this disease has caused her to have extended stays in the hospital and dozens of doctors office visits. Just recently, Charlotte spend 20 days in the hospital because of a respiratory virus. During this stay she was intubated and on a ventilator for eight days to help her body fight off the virus.
Now, 3-month-old Charlotte is doing well. However, the Davises have been swamped with the expensive medical bills. Because of this, Natasha Davis’ best friend, Ashley Howard, decided to host a fundraiser to help ease the family’s financial concerns.
“Natasha and Justin’s three girls mean the world to me, and it absolutely broke my heart to see them going through all of this with Charlotte,” Howard said. “I knew that they would be overwhelmed with hospital bills after she was discharged and I wanted to help.”
The spaghetti benefit dinner will take place from 1 to 5 p.m. March 24 at the Fraternal Order Of Eagles Club building at 2671 Clarksburg Road in Buckhannon. Raffle drawings will be included in the fundraiser.
For those who cannot attend but would like to offer support, donations can be mailed to PO Box 29, Rock Cave, WV 26234. Anyone who would like more information can call 304-613-3837.
“It means so much. It’s overwhelming,” Natasha Davis said about the upcoming benefit. “We’re so thankful to have such great people supporting us, and it just means a lot.”