Couple suffers loss of two infants to rare disorder

Couple suffers loss of two infants to rare disorder

SHREVEPORT, LA (KSLA) - It’s heartbreaking and at times unbearable for one Shreveport couple who have suffered the lose of two infants within a three year period. Initially doctors said their six month old daughter, Averie Grace had a mystery illness.

Doctors were baffled as to what was causing the child’s seizures.

After brief stays at two different hospitals, Josh and Jessica Boggs were sent to Children’s Hospital in New Orleans. Jessica said doctors there were puzzled as well. “No one could figure anything out. They were running test after test and they would come back and shake their heads at us and say your daughter is a medical mystery and no one knows what is going on.”

The Boggs eventually brought their daughter home after doctors had no answers. Averie died a month after coming home. “It actually took us about six months to get her death certificate because they didn’t know what to put on it for the cause of death,” according to Jessica.

(Source: Joshua and Jessica Boggs)

Three years later, the Boggs were pregnant again.

In September of 2017 Jessica gave birth to Greyson Hollis. Jessica recalls one morning picking him up from his crib. “He was babbling in his crib so I went to pick him up and I was walking to let the dogs out like I do every morning and had him on my hip. He fell backwards a little bit so I grabbed him. I immediately felt something wasn’t right so I immediately put him on the floor and I noticed he was seizing.” Jessica said she knew it wasn’t a coincidence.

Both Averie and Greyson were around the same age when their seizures started. Jessica and Josh were about to walk the same path they did just few years before.

The couple was offered a genetic test this time with Greyson. The now $5,000 is covered by insurance. During Averie’s illness it was $25,000 and not covered by insurance.

Josh describes this test as finding the needle in a haystack. Jessica, Josh, and Greyson gave blood and a week later, doctors and the Boggs were stunned at the results. Greyson was diagnosed with POL-G Related illness. Jessica says it is a genetic disorder that has no cure.

(Source: Joshua and Jessica Boggs)

Josh describes the affects it has on the body. “He started having muscle spasms all over his body. An involuntary muscle jerk it went from his hand to everywhere. It was so bad that the doctors thought he would never make it out of the hospital.” Greyson did end up going home, but Jessica and Josh knew their time was limited and wanted to spend as much time with him as possible.

Josh said he took a leave of absence from his job to spend time with his son. He only went back to work when the family received a notice their insurance was running out.

Pol-G is a rare genetic disorder. According to Josh, “It’s extremely rare. To be exact just to be a carrier of POL-G is 1 in 200,000 so the odds of me meeting Jess is 1 in 200,000.” Further research shows there is a 1 in four chance of having a baby with POL-G which often causes liver failure. “I ask them how often have you seen this if it is that rare and he said we have seen it in two babies down here. Your daughter and your son.” That’s the response Josh got from doctors at Children’s Hospital in New Orleans.

It’s hard for the couple to look to the future when they are surrounded by just memories. Josh says his two babies never had a chance from birth. Greyson passed away last month.

The family has had a double dose of heartache in a short amount of time. Medical bills continue to roll in and the family is still tying up loose ends after not having life insurance for little Greyson.

(Source: Joshua and Jessica Boggs)

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