LAKE CHARLES, LA (KPLC) - A DeQuincy baby is in the fight for his life, as he battles each day against a rare genetic disorder. 9-month-old Maximus Berwick and his parents are committed to beating the odds against this potentially fatal condition.
Laci Berwick is a full-time mom of four active youngsters. While she smiles today, Laci has already faced the devastation of losing an infant - a baby girl named Audrey, who died in the hospital eight years ago. "There was a lot of 'this might have happened,' but because she died in a hospital, there was no autopsy, so we don't really know the cause of death," says Laci.
It was not until her most recent pregnancy with little Maximus that Laci feared losing another child. "We were told he would be a healthy, happy baby - and he was...at first," she says.
Maximus Berwick was born May 22nd, 2009, weighing in at a small, but seemingly healthy 5 pounds, 5 ounces. With each passing hour, though, Max's temperature and weight began to drop. "At three days old," says Laci, "he completely stopped eating and he wouldn't take any food. I was getting released from the hospital, so they decided to put him in the NICU at that point."
That was the first of several weeks in intensive care with Max's vitals deteriorating. As doctors narrowed down what could possibly be affecting Max, his parents were given tough news. "They told us some of the things that he could potentially have are 'incompatible with life, so you might lose your child tonight,'" says Laci.
At five days old, Max's newborn screening came back showing an ammonia level of 900. The normal level is between 0 and 40. Further testing showed that Max had a rare genetic disorder called Methylmalonic Acidemia or MMA. Max's pediatrician, Dr. Rachel Chatters says, "Methylmalonic Acidemia is a deficiency of a certain enzyme needed for metabolism."
Dr. Chatters says with MMA the body cannot break down certain proteins and fats, which leads to a build-up of acid in the body that can be fatal. "They tend to live into their 20s with a lot of special guidance from dieticians, physicians and a strong commitment from the family," says Dr. Chatters.
Helping Max live through each day has become Laci and dad, Trent's, life purpose. "It's worth everything that I've had to give up," says Trent, "and I wouldn't change anything."
While Max's survival today is dependent on a feeding tube, a shunt to control brain bleeding and a strict diet, research on MMA mice treated with gene therapy showed that there could be a cure for this condition - giving hope to parents of MMA kids. "My hope for him is that he be cured," says Laci, "that could potentially mean that Max could die of old age before anything else and not have to struggle with this for the rest of his life."
*MMA is passed down from parent to child and if Laci and Trent decide to have another baby, there is a 1 in 8 chance that baby will also inherit the disorder.