CEDAR SPRINGS, Mich. (WOOD) — A Cedar Springs mother is hoping to raise awareness on KBG syndrome, a rare genetic disorder, after her baby son was diagnosed with it.

Oliver Holtrop, 1, is just like any other baby. He loves to play with his older brother Levi, knock over his blocks and babble. He was just six 6 old when he was diagnosed with KBG syndrome, which doctors say fewer than 800 people worldwide have.

“When he was born, he was sick of all of the time,” his mother Jessica Holtrop said. “Other than that, he has an abnormally large fontanel, so his soft spot is a lot bigger than other kids and it’s not really closing. And then at 6 months, he started not hitting milestones that we would expect him to hit at 6 months.”

According to the National Organization for Rare Disorders, KBG syndrome is caused by either an alteration in a specific gene labeled ANKRD11 or loss of genetic material from a chromosome, 16Q.

“In general, people that have this condition will have things like developmental delay, learning difficulties. They can have epilepsy, so seizures,” Dr. Caleb Bupp, the division chief for medical genetics at Corewell Health, said. “Not every patient is the same. This is super, super rare.”

Holtrop also said Oliver struggles with eating, another symptom of KBG syndrome.

“Still to this day, he is not really eating solids very well,” she said. “We’re reliant on formula and we have Pediasure after he turns a year old. Hoping that we can transition him sometime to solid food.”

The family said the biggest hurdle for them right now is medical coverage. Holtrop said they recently applied for the state-run Children with Special Needs Fund, which she said has more than 7,000 qualifying conditions, but Oliver’s syndrome is so rare that it wasn’t on the list.

“We’ve been denied more than a few times, just because it’s so rare there’s not a lot of research,” Holtrop said.

Bupp said that it can be a hard road for people.

“We are trying to make health care simple, affordable, exceptional, equitable, right?” Bupp said. “These are all the reasons we’re trying to do this for our patients. This is not easy for folks.”