Transcripts

Life With MPSIII: Revisiting A Degenerative Disease

MS. REBECCA SHEIR

00:00:09
Welcome back to "Metro Connection." I'm Rebecca Sheir. And we're calling today's show Follow-ups. Basically, we're taking a handful of "Metro Connection" stories from the past year or so and doing a sort of where-are-they-now thing. To kick of this part of the show, we'll follow up on a story we did about two children in Virginia, Oliver and Waverly McNeil. In 2008, the siblings were diagnosed with mucopolysaccharidosis, or MPS III. The degenerative disease shows up in one of every 24,000 births. Kids who have MPS III lack the enzyme that breaks down natural sugars in the body.

MR. MATT MCNEIL

00:00:43
It's essentially like the city if the sanitation workers went on strike. There's nothing to take the garbage out, so it just piles up.

SHEIR

00:00:50
That's Oliver and Waverly's father, Matt McNeil. You may remember him as the author of "The Strange Tale of Ben Beesley," a young adult novel inspired by his kids. Anyway, as Matt knows so well, all that garbage he talks about damages the cells and brain and eventually leads to death. We first spoke with the McNeils in May, 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.

SHEIR

00:01:23
But when I see him again, around 5:00 on a recent Monday evening…

SHEIR

00:01:30
… the little guy is in a far chiller mood.

MS. SHEILA JOY

00:01:33
And this little guy over here is Oliver.

SHEIR

00:01:37
Oliver is 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. Sheila Joy is the director of advancement.

JOY

00:01:51
So this is just a time where they will just sit and kind of relax and watch a movie and just chill out.

SHEIR

00:01:58
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.

SHEIR

00:02:11
It's so funny because we're sitting here in this beautiful room in the middle of Jill's House and staff members keep walking by and saying, you two shouldn't be here. This is your chance to have a respite. Why are you here?

MCNEIL

00:02:21
Yeah, we feel guilty. We're apparently doing it wrong.

SHEIR

00:02:25
But seriously, says Matt McNeil, Jill's House has been a godsend for him and his wife Shannon.

MCNEIL

00:02:30
The first time we came here to drop Waverly off, I actually got very teary-eyed. You know, 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.

SHEIR

00:02:59
This past summer, Matt and Shannon were finding it difficult to get any rest at all, as it got more and more difficult for Waverly to swallow.

MCNEIL

00:03:08
She was actually at risk of choking on the pureed table foods we were giving her, applesauce and yogurts. 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 go make sure she's okay because I don't think that I would hear her if she actually choked on something.

SHEIR

00:03:27
So, at the end of August, Waverly's doctors put in a feeding tube.

MCNEIL

00:03:31
They put a little button, a sort of a port that goes right into her stomach. 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, where actually we had to curb her intake to slow her down. I can only lift so much and she was getting close to the outer limit.

SHEIR

00:03:48
Oliver, who will be six on Dec 30, can still feed himself, but Shannon says he's been having trouble moving around.

MS. SHANNON MCNEIL

00:03:56
We're moving in to orthotics for him now. 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.

SHEIR

00:04:10
The thing is, it isn't just Oliver's physical development that's sliding. Over the past year or so…

MCNEIL

00:04:15
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.

SHEIR

00:04:29
Where is Waverly right now? Where does she fall?

MCNEIL

00:04:31
I think the last time we had her assessed she was 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. And that's what she's able to really understand and how she'll best respond.

SHEIR

00:04:46
Waverly turned nine on Nov. 30. And though the family celebrated over milkshakes at their favorite diner, Shannon says this birthday was not easy.

MCNEIL

00:04:56
When you get the diagnosis, they tell you, like, ten seems to be the date. Like the early date of average life expectancy. So nine just felt--I don't know. What's the word I'm looking for?

MCNEIL

00:05:08
Yeah, yeah, it came with more of a sense of dread.

MCNEIL

00:05:13
Yeah.

MCNEIL

00:05:13
It was dreadful in a way.

SHEIR

00:05:15
And celebrating this Christmas feels especially hard, too.

MCNEIL

00:05:19
I'm 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.

SHEIR

00:05:36
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.

MCNEIL

00:05:47
She loves to put her feet in his fur. And he tolerates it.

SHEIR

00:05:51
And he follows Oliver around everywhere he goes.

MCNEIL

00:05:55
I think Oliver, of the four of us, is the least interested in him. And Watson seems to think Oliver is his favorite.

SHEIR

00:06:01
In fact, the gentle, playful pup has brought comfort to all their lives, as, of course, have evenings like this. So what are you going to do with your time, other than do a radio interview with me?

MCNEIL

00:06:14
Talk to Rebecca was the first on our list.

MCNEIL

00:06:14
That's right.

MCNEIL

00:06:15
We're going to see what we feel like eating.

MCNEIL

00:06:17
Yeah.

MCNEIL

00:06:17
You're going to hang some pictures, I think.

MCNEIL

00:06:18
Yeah, really exciting stuff, you know.

SHEIR

00:06:20
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.

MCNEIL

00:06:31
I can't wait to sleep. I'm so excited to just go to bed and sleep. As long as the puppy doesn't wake us up.

SHEIR

00:06:40
And tomorrow, once they're all rested and refreshed, the McNeils will get together again, ready to face, and cherish, another day.

SHEIR

00:06:53
To read more about MPSIII and to find information on Matt McNeil's book, "The Strange Tale of Ben Beesley," visit our website, metroconnection.org.
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