News

Blind Faith

Continued from page 4

At the same time, Sam and Melinda have been amazed by the kindness of strangers. It's as if people who don't know the Watsons were better equipped -- perhaps better insulated -- to share the family's pain. For example, the Watsons are members of Foundry United Methodist Church, where Astros manager Larry Dierker and his wife, Judy, also worship. According to Sam, when the Dierkers learned of Luke and Rachel's illness, they didn't hesitate to help.

This past spring the Watsons went to Disney World, a trip arranged for Rachel through the Make A Wish Foundation; the year before, the organization had provided the same trip for Luke. Before leaving for Florida, the Watsons inquired through their church if Luke could meet a player at the Astros' spring training camp in Kissimmee. Instead, Dierker arranged for tickets to a game, a tour of the clubhouse, and introductions to several members of the team.

"Burt Hooten's wife came and met us at the gate, took us in the complex," says Sam. "[Dierker] came out and talked to us before and after the game. Moises Alou stopped on his way out of the dugout and shook Luke's hand. Signed a cap for him. Tony Eusebio did the same thing. So did Luke's hero Jose Lima. Luke can't see them, but he's in awe of them.

"I've just been floored by so many people going the extra mile to help out. They care so much about our situation. It's definitely been eye-opening."

In the days and years to come, the Watsons will need those new friends, as well as their family, more than ever. As their children's health continues to decline, the Watsons' financial and emotional pain will only increase. Although most of their medical expenses are covered by the insurance plan Sam has through the Corps of Engineers, that soon will change, say BDSRA officials. Children with Batten disease often fall through the cracks in the health care system.

"If you go in and talk to the different services like social security, Medicaid and a lot of the other services, you'll find that there is no description in any of their books about Batten disease, but there are descriptions of cystic fibrosis, cerebral palsy, the more common childhood disorders," says BDSRA president Johnston. "When the child progresses to where he or she needs full-time care, the only thing the insurance companies will pay for are durable medical goods like wheelchairs, and in-home skilled nursing. But most of the children usually end up with a feeding tube. They have to have breathing treatments and things like that that insurance companies define as custodial care, and they don't cover that. They don't cover diapers, feeding formulas and such things. So we either have to turn to Medicaid or Medicaid waiver programs or some other type of state waiver program. Or foot the bill ourselves."

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.

• 1
• 2
• 3
• 4
• 5
• 6
Next Page »