MS. REBECCA SHEIR
While we're on the subject of young people, it can be a huge thing for parents of young people to witness and record their youngsters firsts, right? Their first smile, their first word, their first steps. But for the past few years, a mother and father in Northern Virginia have been witnessing and recording something else.
MS. WAVERLY MCNEIL
MS. SHANNON MCNEIL
Yes, I got a Mommy on tape, good girl, Wavy. Good girl. We got one for the camera. We can always remember, November 20, 2009, I got a Mommy.
And Shannon McNeil believes this videotaped moment we're hearing was the last Mommy she got.
Good girl, baby girl.
Shannon's daughter, Waverly, wasn't actually a baby when this video was shot. The brown-haired, long-lashed little girl was 6. At 4, she'd been diagnosed with a genetic degenerative disorder present in one of every 24,000 births, Sanfilippo Syndrome or MPS III. So MPS III, what does that stand for?
MR. MATT MCNEIL
This is Waverly's dad, Matt. I met him and his family at McLain's Clemyjontri Park, a playground equipped for kids with special needs.
Kids with MPS III will make sugars that everybody makes, but they just can't get rid of them because they lack and enzyme that's necessary for breaking them down. So it's essentially like the city of the sanitation workers went on strike. There's nothing to take the garbage out so it just piles up.
And it starts to damage cells and the brain in stages. In stage one, kids seem happy and healthy.
But then you'll start to see little changes where they become a little more hyperactive, they have restless sleeping.
Stage two brings even more restless sleeping.
Waverly would go nights on end where she'd be up five hours a night.
She just couldn't sit still.
And less memory.
She started to forget things like how to use silverware and feeding herself. And she started to have a lot of accidents. So she was semi-toilet trained for a while and we put her back in diapers.
In fact, Matt says, his 8year-old daughter has regressed to the cognitive equivalent of a 1-year-old, maybe younger. And as she moves to stage III...
It's just slowing down. She has completely stopped talking, singing. She can still walk with assistance. She's in a wheelchair, though, pretty much, for her own safety.
Eventually, Waverly won't be able to walk, chew or swallow.
And typically what happens is kids with MPS III will usually contract pneumonia from aspirations, some fluids will get in their lungs. They'll get an infection.
And until a cure is found, there is no stage IV. Now, at this point, I should probably mention, Waverly isn't the only McNeil with MPS III. Both Matt and Shannon carry a recessive gene for the disorder so their chances of conceiving kids with MPS III was one in four. And Waverly's 5-year-old brother, Oliver...
MR. OLIVER MCNEIL
...was diagnosed when he was 16 months.
That's about the best of his voice that we ever get to hear is his little sort of Chewbacca yaps.
Oliver may not talk, but he sure can walk, careening his stout little frame.
Hey, Oliver, what you doing?
All over the playground.
He's such a cute little trouble maker.
Still, at this point, his cognitive ability is like that of a one and a half year old.
A kid asked me, so is he a big kid or a baby? And I said, well, sort of both.
But Oliver's heading more toward the ladder now that he's in the second stage of MPS III. Matt says, the little guy's development has pretty much peaked.
And now we're starting to see that he's coming down. He's sort of gained all the new skills he'll ever gain.
What's interesting, though, is because Oliver was diagnosed at an earlier age than Waverly was, in a way, Matt and Shannon were a bit more prepared.
We knew that everything he was picking up, he was going to lose at some point. With Waverly, we had no idea. So our expectations were, here's a little girl that we're raising to be an adult and it was much harder at every first that we had with her, every first regression that we realized, oh, she's not doing this anymore, that anymore. And with Oliver, we always knew it was coming and we knew about when it was coming.
But that preparation didn't necessarily make it easier to cope. In fact, Matt says after his children's diagnosis in 2008, he fell apart.
And tried to, you know, be stiff upper lip about it and I think it was just more me sort of shutting down a little bit, retreating.
So he began to write. He'd been dabbling in writing since college, though he'd never finished anything. Yet, each night after putting the kids to bed, he'd head to his computer and write and write...
And the more I came back to writing and I was slowly sort of lifting out of the funk that I had slid into...
Until eventually he had a young adult novel on his hands, "The Strange Tale of Ben Beesley." It's about a fly who sets out to save his fellow flies, Waverly and Oliver, from the debilitating venom of some malicious poison spiders, as in MPS. So then, would you call this book, somewhat of a memoir, autobiography, allegory?
Yeah, for the kids, it's complete, sort of action-adventure, book about insects, but it was very much our memoir of my story with our kids.
Only in this story -- and a major spoiler alert here, Waverly and Oliver get cured.
And when I allowed myself to write a happy ending, I think that's when I started to realize that the book could be useful to us to try to get to it in real life.
That's why all proceeds from the book sales will go to the National MPS Society to help fund research for what Matt calls and orphan disease.
There aren't that many people afflicted by it so it doesn't get a lot of attention from researchers. So the more families who are affected can do to raise money to find research that'll lead to someday a cure, but at least a treatment that gives them a fighting chance. I mean, that's what we had to do.
But for now, Matt and Shannon take things day by day and relish the small joys they experience with their kids. Like the joy of Oliver's grin as Shannon pushes him in a red plastic swing.
Ready, steady, go. Good boy.
Or the joy of Waverly's giggles.
Hey, Wavy, Wavy. Waverly. That's my girl.
Shannon and Matt say Waverly's actually been crying more lately. They're not sure why, but one thing is certain to calm her down.
She has always liked to sing and she reacts well to singing. Like, she'll fuss like that, but then...
Keep going. Yah, good singing honey. That was a good girl.
And even though today's Waverly is a very different girl from the one you hear in this 2007 video, her proud parents will be the first to tell you, she's still good. And difficult as it can be, sometimes, just having her and Oliver around for however long they'll stay, is nothing short of great. "The Strange Tale of Ben Beesley" comes out May 15th on International MPS Awareness day. You can learn more about the book and MPS III and see and hear more of Waverly and Oliver on our website metroconnection.org.
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