MATTAWAN, MI -- Six-month-old Russell "Bubby" Cruzan III is one of 88 people in the world to ever suffer from a mutation of the FBXL4 gene, according to his mother Michelle Budnik-Nap.

His mutation comes in the form of a rare disease, mitochondrial DNA depletion syndrome 13. The disease was only discovered in 2013, so not much is known about it, but for Russell it means his body struggles with many functions and he might not make it to his 2nd birthday.

His disease was in the news recently with Charlie Gard, a baby in London who had been struggling with the same disease and died in July. Charlie's parents had been interested in an experimental treatment offered in the U.S. but a legal battle complicated the situation, and Charlie did not make it.

Budnik-Nap and Russell Cruzan II have hope for their baby, however. They have been pushing for appointments and consultations to happen as soon as possible, as they fight the progression of Russell's disease.

While Budnik-Nap and Cruzan are tentatively looking at nucleoside therapy, the treatment Charlie's parents were interested in, the Mattawan couple is much more actively exploring DCA treatment as an option. Though the treatment was originally developed for cancer, they believe it might work for Russell as well.

"His condition is so rare that the doctors around here really don't know much about it," Budnik-Nap said.

That's why it took weeks to figure out what was going wrong with Russell and why Budnik-Nap and Cruzan have to regularly make trips to Grand Rapids, Ann Arbor and Detroit to consult with various specialists and medical professionals. It's also why the couple has to go to Boston for a consultation with a specialist who can get them access to DCA treatment.

"It's a progressive disease, so whatever we can do now sets the stage for later in life," Budnik-Nap said. "They said he would likely never walk or talk, but he's babbling, and he rolls over, so we have high hopes that will not be the case if we strenuously work with him."

Russell's disease has affected the family in many ways. Because he needs monitoring and has so many appointments, Budnik-Nap had to quit her job so that one of them can to handle all of that.

Budnik-Nap and Cruzan also haven't been able to give their three daughters the attention they would like to, with all the trips they have to make with their baby brother. The girls, ages 3, 6 and 9, are handling it with great aplomb.

Kerri Metheny, the 9-year-old, particularly adores her little brother.

"She's the one that can make him smile, always," Budnik-Nap said. Kerri can even help with some of Russell's day-to-day medical procedures, under supervision.

The family's insurance will cover the majority of the cost of the consultations. However, Russell's medicines still cost a hefty amount out-of-pocket, and the family isn't sure how much the actual treatment will end up costing once they reach that stage. Since the treatments they are looking into are experimental, it's unlikely they will be covered by insurance.

The family has set up a crowdfunding page to help with their expenses: www.youcaring.com/russellcruzan-887269.

Budnik-Nap has also set up a Facebook group, "Bubs' Prayer Warriors," where she posts updates about Russell's condition and the family situation.