An Oakhurst couple, whose 3-month-old baby has been in a Stanford hospital since he was 5 days old, is in need of help.
Their son, Ethan Jones, was born with myotonic dystrophy, a rare and severe muscular disease, and had a diaphragm operation July 3. He is now using a continuous positive airway pressure machine (CPAP) to help him breath and is connected to a feeding tube.
"Myotonic dystrophy attacks the most important muscles in the body," said Ethan's father Neal Jones. "It will attack normal muscles too, but it especially affects the most important muscles -- the brain, the heart, the lungs and everything around it."
Neal and wife Tara Jones, also the parents of three other young children, said doctors told them Ethan's disease primarily affected his lungs, and that his brain does not appear to be affected. His heart is also in good condition, with only some medication needed to help with an irregular heartbeat. His feet are turned slightly inward, but should be able to be corrected with leg braces, Tara said.
Starting Tuesday, doctors began taking Ethan off assisted breathing for an hour twice a day to see if he can breath on his own. Tara said they should know within the month whether he will need a tracheotomy, where a hole is cut into the neck and a breathing tube is inserted.
The risks of infection increase with that procedure, and they are hopeful it won't be needed. Doctors told them Tuesday they hope Ethan will be able to go home within the next month.
Since his hospitalization, the family has struggled to stay afloat with normal expenses. Along with the medical bills to come, the added cost of gas, lodging and food to visit their baby on the weekends has been very difficult for the family of six. Neal works at Chukchansi Gold Resort & Casino as a bell captain and Tara is a stay-at-home mom who cares for their three other children: Bradley, 10, Emily, 8, and Wesley, 4.
Neal and Tara lost their fourth child, Nicholas, in 2010, who died at 5 days old. Doctors didn't have an explanation at the time, saying it was a "fluke thing" and that something must have happened in Tara's body while she was pregnant that cut off oxygen to her baby. Not until after Ethan was born did doctors discover that Tara likely carried the gene for myotonic/muscular dystrophy, which can be passed on to offspring.
To help the family, their close friend Jessica Sanchez put on a fundraiser car wash Sunday with other residents in the Miller's Mountain Sports parking lot in Oakhurst that raised about $1,000.
"I'm very thankful for the community we live in," Sanchez said. "We should have a big heart on the map."
Since then, more community members have rallied to help. A fundraiser dinner has been scheduled for Friday, July 20, starting at 6 p.m. at Sierra Pines Church off Highway 49 in Oakhurst. All proceeds from the church's monthly "Open Mic Night," what's normally a $6 dinner with drink and dessert, will go to help the Jones family.
A donation account to help the Jones family has been set up at Wells Fargo Bank under "Tara Jones and Debbie Herold (Tara's mother): Ethan Jones Donation Fund."
A fundraiser yard sale will also be held Saturday, Aug. 4 from 8 a.m. to 2 p.m. at 40596 Goldside Drive, located off Highway 49, Oakhurst. Items can also be donated for the sale at the same address anytime, or residents can call Tara at (559) 676-6773.
Updates about Ethan are available online at facebook.com/HelpingTheJonesFamily.
"I've known the Jones family for over seven years and they are just really good people -- kind, humble, caring, loving people," Sanchez said. "They've had a good four or five years of rough times. Neal's dad passed away in a car accident that Tara's dad was involved in too, and a couple years after that, her dad died. Then a year later, their baby Nicholas' passing, then Ethan being in the hospital now ... They have faith in God and get through each day one day at a time, it's the best they can do, but sometimes people need help ... They wouldn't ask for help on their own, and I know in their heart of hearts that they would do the same for anyone else ... I just really hope they get all of the help they need."
"Our biggest hope is that Ethan can breath and will be coming home soon," Tara said.
Luckily, Ethan is in good hands at Lucile Packard Children's Hospital at Stanford.
"They are amazing over there; they are considered one of the best hospitals in the United States for muscular dystrophy issues," Neal said. "One of the best genetic doctors also works right next to them -- he's the one that had Ethan tested for myotonic dystrophy when he was seven or eight days old."
When Ethan was at a hospital in Fresno after he was born, the couple said some doctors suggested to "let him go" because he likely wouldn't make it.
"They were saying, 'You can transfer him to another hospital if you want,' so we prayed about it," Neal said. "For me, I just prayed for a sign that transferring him was the right thing to do. After our son Nicholas passed away, they told us he clearly had been in pain before he died, and we didn't want that for Ethan. Then, the first time Tara was holding Ethan, he opened his eyes for the first time. That was the sign we needed."