The McNeil family poses for a photo in Washington, D.C.
In 2008, siblings Oliver and Waverly McNeil were diagnosed with mucopolysaccharidosis, or MPS III. The degenerative disease shows up in one of every 24,000 births. Kids with MPS III lack the enzyme that breaks down natural sugars in the body.
As father Matt McNeil told us back in May 2012, "It's essentially like a city if the sanitation workers went on strike. There's nothing to take the garbage out so it just piles up." And all that "garbage" damages the cells and brain, and eventually leads to death.
When we met the McNeils, we talked with them at a playground for children with special needs. Waverly was 8, and while she couldn't talk, she could walk, though she was often in a wheelchair. Oliver was 5, and though he wasn't talking either, he was darting and dashing all over the place.
But when we see Oliver again, on a recent Monday evening, he's in a far chiller mood. He's sitting on the floor, flipping the pages of a picture book. He and Waverly are spending the night at Jill's House: a facility in Fairfax, Va., which provides overnight stays and day camps for children and teens with intellectual disabilities.
The 42,000-square-foot building was built in 2010 with a two-fold purpose. One: to give kids with intellectual disabilities an adventure away from home. And two: to give the parents of these kids a break... at home.
"The first time we came here to drop Waverly off, I actually got very teary-eyed," Matt McNeil recalls. "They have a bunch of stones that people donated out front that are engraved. And one of them says: 'Come to me all you who are heavy laden, and I will give you rest.'
"And not just for us, but I think for all the parents who come here who are dealing with kids who have significant special needs. It makes it difficult to hold a regular job, to keep a social life. And for a weekend or night they can know that their kids are cared for, and get some rest."
This past summer, Matt and his wife, Shannon, were finding it difficult to get any rest at all, as it got more and more difficult for Waverly to swallow.
"She was actually at risk of choking on the pureed table foods we were giving her: applesauce and yogurts," Matt says. "So every spoonful was filled with dread and panic. And I'd hear her coughing at night, then I'd get out of bed a lot to make sure she's okay, because I don't think that I would hear her if she actually choked on something."
So, at the end of August, Waverly's doctors put in a feeding tube.
"They put a little button, a sort of port that goes right into her stomach," Matt explains. "And now she's on a liquid diet. She was losing a lot of weight and now she's sort of stabilized. And actually gained weight. We actually had to curb her intake to slow her down. I can only lift so much, and she was getting close to the outer limit!"
Oliver, who will be six on Dec 30, can still feed himself, but Shannon says he's been having trouble moving around.
"We're moving in to orthotics for him," she says. "He's just starting to stumble, feet are turning in and falling occasionally, which is confusing for him. So hopefully that will help kind of straighten his feet, keep him walking and mobile for longer."
But it isn't just Oliver's physical development that's sliding. Over the past year or so, says Shannon, "he's lost about seven months of cognitive development, which is significant, yet within like the trajectory of the disease. So right now I think they have him on about a 17-month-old developmental age."
Shannon says Waverly is "right around the 12- to 13-month range. So typically I always tell people when they're interacting with her, you know, 'Think of her as like a 1-year old.' That's what she's able to really understand, and how she'll best respond."
Waverly turned 9 on Nov. 30. And though the family celebrated over milkshakes at their favorite diner, Shannon says this birthday was not easy.
"When you get the diagnosis, they tell you like 10 seems to be the date. Like the early date of average life expectancy."
That's why this birthday, says Matt, "came with more of a sense of dread."
And celebrating this Christmas feels especially hard, too, says Shannon. "I'm just starting to get that feeling of, 'is this my last Christmas with her?' So, like, I hung twinkling lights everywhere because she just loves to look at them! And our house looks a little crazy but that's what makes her happy. And I'm just trying to create as many moments and memories as we can."
That's why the McNeils are planning a trip to Disney World right after New Years. And why they recently brought home a golden-retriever puppy they hope to train as a therapy dog. Shannon says Watson is great with Waverly, and he follows Oliver around everywhere he goes.
In fact, the gentle, playful pup has brought comfort to all their lives, as, of course, have evenings like this one, when the kids stay overnight at Jill's House.
As for what Matt and Shannon McNeil plan on doing tonight, they say they'll have dinner, hang some photos... "Really exciting stuff," jokes Shannon.
But what they're most looking forward to, Shannon says, after four-odd years of laboring and toiling with MPS III, is that increasingly rare luxury.
"I can't wait to sleep!" Shannon says with a smile. "I'm so excited to just go to bed, and sleep. As long as the puppy doesn't wake us up!"
And tomorrow, once they're all rested and refreshed, the McNeils will get together again, ready to face, and cherish, another day.
[Music: "Goodnight" by Jason Falkner from Bedtime With The Beatles: Part Two]
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