Boy with Rare Brain Disease Makes Wish for New Room

Fentress County native, Owen Davidson has seen more surgeries than birthdays. The three-year-old deals with a rare disease called hydrocephalus.

Owen’s mother Crystal Davidson said doctors diagnosed Owen after he suffered a brain hemorrhage at birth.

“He just had a grade four and a grade three brain bleed at birth, which caused him to have that. And that’s just the fluid build-up on the brain and it just can’t be released,” Davidson said. “So they have to put a shunt in to help release all that fluid into his stomach. He had the worst brain bleed you can possibly have and it was such a bad brain bleed that it damaged a lot of his brain.”

Hydrocephalus caused a number of Owen’s other conditions, including cerebral palsy.

Owen will undergo his sixth surgery today. Davidson said Owen’s shunt malfunctioned.

“It is very stressful. He does have a twin sister, Owen does. And then he has three older siblings,” Davidson said. “It is very stressful but I feel like God doesn’t give you more than you can handle, so apparently, He thought I could handle all this.”

The Pediatric Hydrocephalus Foundation appointed Owen as a national ambassador earlier in the year.

“There was a boy and a girl chosen and they are national ambassadors for the Hydrocephalus Awareness. And if all plans out, we are actually supposed to go to Washington D.C. in August,” Davidson said. “But I mean if the good Lord helps everything and he is healthy and able to take that travel, we will go down there. But he is the face of all the campaigning that they do to help spread the awareness for hydrocephalus because nobody really knows what that is. They have never heard of it.”

Davidson said traveling poses a problem when Owen has to go through surgeries.

Owen recently received confirmation from the Make a Wish Foundation. Davidson said Make a Wish seemed surprised the family didn’t want to travel to Disneyland.

Instead of Disneyland, Davidson said the foundation will decorate Owen’s new room.

“I want a room built onto our house for him. You know he is just going to continue to get bigger, his needs are going to get more and more, his equipment is going to get bigger and bigger,” Davidson said. “He needs his own space. Right now he uses a stander. He is in the process of getting a gait trainer which is like a big walker to help him learn how to weight bear on his feet.”

Davidson said she has to raise enough money to pay for the construction of a new room. The family will receive assistance from different foundations but only if the family prepares to build in the coming weeks, Davidson said.

Owen Davidson will turn four-years-old in October.

For more information on how to donate, visit Owen the CP and Hydro Warrior Facebook page.