It has been four years since we met Maximus Berwick, of DeQuincy.
He was just a baby at the time, and his mom Laci was desperately trying to keep him alive.
"His first 10 weeks of life included over 100 blood transfusions, seven surgeries and numerous moments in which they told us 'We don't know if he's going to make it through the night,'" she said.
Laci walked down that dark road before. Her baby girl Audrey died in the hospital 12 years ago.
"Watching it happen once is horrible," she said. "Watching it happen again is the most heart-breaking thing ... not just for me, for our entire family."
The Berwicks never found out what took Audrey's life, but once they got Max's diagnosis, they were sure it was the same thing -- methlymalonic acidemia.
"His body does not make a chemical called CoA mutase in his kidney and his liver," Laci said. "What that does is it makes his body unable to break down four specific amino acids."
Because Max's body cannot break down those amino acids, they turn into methylmalonic acids that build up in his body, poisoning the tissue in his organs.
"Your mommy instincts kick in and say 'I can't,'" Laci said. "This has to stop. We have to do something; we have to find a way to stop this."
At the height of his sickness, Max's ammonia levels were over 1,000. A healthy person's is between zero and 40.
Max has been on dialysis and is always connected to a feeding tube, and there is no cure for this condition.
"He is in what they consider to be the beginning stages of renal failure and the beginning stages of kidney disease," Laci said.
The life expectancy for someone with MMA is uncertain.
It has been hard on siblings Juliana, Matthew and Hailiey, who are all homeschooled to cut down on germ exposure.
"I worried about what boys I liked, and what my favorite color was and what shirt I wanted to wear with my skirt," Hailiey said. "(But) when Max was born, I realized that there's more to life than just that."
Money is tight, because of Max's care. Laci's job is at home keeping Max alive.
Despite the tough times, this family said they make it through together.
"I don't have a plan," Laci said. "Sometimes I'm down to my last dollar, and I'll get a card in the mail with $20 in it, and that buys some milk and some bread. We just do it. There's not another option."
Max is on medication to slow the damage to his kidneys.
MMA is inherited. The mother and father both have to be carriers of the mutated gene. Their child will have a one in four chance of being a carrier and a one in eight chance of being born with MMA.
If you want to help Max's family offset expenses related to his care, there is an account set up online. Click here to pitch in for the Berwicks.
Max has his own Facebook page where you can learn more about him and MMA.
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