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In the few years that it will take for Rachel and Luke to lose all ability to care for themselves, Sam and Melinda Watson will be facing a double set of bills covered by neither insurance nor federal or state programs. But when the Watsons talk about money, they don't dwell on their lack of it or the looming avalanche of medical expenses. Instead, they seem more concerned about the abysmal amount of funding that trickles into Batten disease research each year. According to the BDSRA, less than $3.5 million was spent on researching the disease last year.
"When you stop to figure the cost, it's in the government's interest to put more into research and find a treatment for it," Johnston says. "We need awareness and we need funding."
They also need a cure, but none is yet on the horizon. In recent clinical trials scientists made some headway in treating infantile Batten with a drug known as Cystagon. They are also looking into gene therapy and enzyme replacement in the battle against late infantile Batten. But so far little progress has been made in the area of juvenile Batten.
In the meantime, about all that Sam and Melinda Watson can do is pray. Pray and enjoy the time they have left with their children. In a small way, they even feel a bit lucky, and maybe even a little blessed.
"We've been given the gift of knowing how much time we have left with them," says Sam. "A lot of our friends are going through divorces, and they never see their kids. We can make the best of our time. We don't miss out when an opportunity comes."
Sometimes Sam thinks about the future, about the life he and Melinda will share after Luke and Rachel are gone. He doesn't believe they will risk having more children, but he admits, "The thought has crossed my mind." He's fairly sure it has crossed Melinda's mind, too. "I see Melinda when she holds my sister's baby," he says, "and she feels like she'd like to" have another one. "But I've had a vasectomy, so I've kind of passed that point."
Reminded that vasectomies can be reversed, Sam laughs out loud. "Yeah, I've seen those signs," he says. "But my experience was so bad, I don't think I want to go back."
He then quickly turns serious again. "But I don't think I would ever want to [have more children]. I think it would kind of take away from [Luke and Rachel] for some reason."
Earlier this spring, on one of the hottest days so far this year, Luke guides Melinda and Rachel through several hallways and doors to the enclosed swimming pool at The Lighthouse of Houston complex on West Dallas. The Lighthouse is a nonprofit organization dedicated to assisting the blind and visually impaired. Luke has only been to the Lighthouse pool once, but he remembers his way through the maze. He stops just before each door but has difficulty finding the handles.
Inside the steamy pool room, swimming instructors put the children through a series of aquatic drills. As her kids go through their paces, Melinda relaxes on a bench and announces that she has resigned from her teaching position. There's a chance she might go back part-time, but she's not sure. Her reasons are hard to refute: Quality moments such as these will soon fade away; Melinda wants to spend all her time with Rachel and Luke. People say she should get a job at her children's school. But Melinda says it would be too hard on her -- too painful to see her kids around healthy children.
Luke and Rachel's swimming lessons are private. Melinda had hoped for group lessons to provide her kids with some interaction with other blind children. However, the group lessons also include special-education boys and girls. Melinda balks at having Luke and Rachel interact with slow children at this point; they will be special-ed kids soon enough, she says.
While Melinda contemplates the future, Luke and Rachel happily dive into the pool to fetch brightly painted plastic eggs that they can spot with what's left of their peripheral vision. Luke then calmly practices floating on his back while a teacher holds his hands. Rachel makes her way through the rings of a giant rainbow-colored snake, which she then uses as a float.
At the end of the 30-minute session, Melinda wraps her children in a couple of beach towels. As they dry off, Luke and Rachel talk about their favorite foods: He likes pizza; she prefers hamburgers. This summer they will travel to Alabama with their parents to visit one of Rachel's friends.
Melinda has told her kids that the reporter is here to write a story about blind children. When asked what is the most difficult thing about losing their vision, Rachel refuses to discuss her situation, other than to say it makes her "mad." Luke, on the other hand, insists he is "happy" to lose his sight. Of course, he also plans to be a major-league baseball player.
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