The famous author Virginia Woolf once said that it’s crucial to have a room of one’s own. That very thought can be applied to Ethan and Nathan Baldwin of Blue Springs, two 18-year-olds who are unlike many boys their age, but also the same.
The famous author Virginia Woolf once said that it’s crucial to have a room of one’s own.
That very thought can be applied to Ethan and Nathan Baldwin of Blue Springs, two 18-year-olds who are unlike many boys their age, but also the same.
They’re different from most because both were born with Bardet-Biedl, a genetic disorder which can cause several symptoms, including mental disability and renal failure. Both boys have had kidney transplants (Nathan at 4 years old and a second one at 6, and Ethan when he was 14 years old).
While other symptoms have eluded them, both also suffer from retinitis pigmentosa, a genetic eye condition that leads to incurable blindness.
But both are the same as many other children, because both have shared a bedroom their entire lives.
As part of their wish through the Dream Factory of Kansas City, both will get their own room and new amenities.
And not a moment too soon.
“It was just getting too crowded,” Ethan said.
“Crowded,” Nathan said. “There’d be a lot of people and hard to move around.”
Both boys appear to compliment each other in appearance and speech. As twins, both have a deep connection to one another, made all the more poignant because of their sickness, which will likely leave them dependent upon their parents and/or caregivers for the remainder of their lives.
Their parents, Scott and Cherri, said the Dream Factory approached the family years ago, but Cherri said they wanted to wait until the boys were old enough to pick their own dream.
“We felt that was a better idea,” she said. “We wanted to let them decide.”
Since birth, the boys have been living in a bedroom that measures 10x10 feet. There were separate beds at one point and, later, bunk beds. While cleaning out the room recently, Scott discovered that the bunk bed frames were wearing a bit thin.
“They were about ready to go,” he said, giving a nervous laugh. “This was good timing.”
The family attended the Dream Factory dinner recently in Kansas City, where they were told what they were going to get. They were quite surprised.
Work on the bedrooms began almost immediately, with Scott, a production manager with AAS Restoration, supervising most of the work. The list of those who are helping, donating supplies and helping in other capacities is almost staggering.
Both bedrooms will be cleaned out and renovated. Most of the building materials and labor will be donated by AAS Restoration, while items that go into the room will be donated and, in some cases, built special.
For instance, Mike Netherton Custom Cabinets of Odessa is supplying materials and labor to build a custom bed and desk for Ethan; and Greg Crowley of Crowley Furniture in Liberty is supplying a bed, two chests of drawers, a desk and mattresses for both beds.
Both rooms will have computers with specialized software to help them see.
Work is expected to be completed in the weeks to come.
Living in such close quarters for so long, the boys get along well, Cherri said.
“They do bicker, but they get along,” she said, adding: “Ethan is our lover, Nathan’s the fighter.”
To cope with close quarters, the boys have shared television schedules and alone time. When they were little, friends crowded into the bedroom and spilled out into the living room. At one point, the master bedroom was upstairs; now it’s downstairs.
“We’ve made a lot of changes through the years,” Scott said.
The family is currently working with the boys as they learn Braille in school.
“It’s a tough time right now,” Cherri said, a reference to the exhaustion the boys often feel by mid-day.
Scott was more up front.
“Have you ever learned a foreign language?” he asked, referring to his son’s learning Braille at Blue Springs High School. “They’re coming along, but it’s still hard.”
Both boys are night-blind and their field of vision is narrowing. There is no way of knowing when either will lose his sight.
“They could just wake up …” Scott said.
Scott has asked the boys their feelings about going blind.
“You have to ask them, to see where they are mentally, and both have the attitude that there’s nothing they can do about it.” He paused.
“They have such great attitudes.”
Scott said Ethan has shown an interest in finance as a profession, something both he and his wife support; Nathan will continue to learn basic living skills. Of the two, Nathan struggles more, mainly because the first four years of his life was so much more difficult than his brother’s.
“I should say the Blue Springs School District has stepped up,” he said. “They’re helping them in any way they can.”
In the meantime, both boys will have a room of their own to call home.