In 2008, Matt McNeil had a job in London with the U.S. Foreign Service Department, a fantastic wife named Shannon, and two beautiful kids.
Oliver, Shannon, Waverly, and Matt McNeil in 2008
Both of Matt's children were hearing impaired, but soon it became apparent that something else was amiss. His daughter, Waverly, was experiencing some difficulties at preschool. They made an appointment with a doctor and spent the next few months trying to get to the bottom of Waverly's medical issues.
Unfortunately, the bottom was a canyon- deep and wide. Matt's wife, Shannon, describes receiving Waverly's diagnosis :
"That meeting is a bit of a blur. I remember them telling me she had MPS III. They began to explain what that meant and I interrupted. I wanted to know if she was going to die. He told me that yes, children with Sanfilippo die tragically young. I then asked what treatments were available. He told me there was nothing we could do."
Waverly was missing a crucial enzyme needed to break down natural sugars already found in the body, a condition called Sanfilippo or MPS III .The sugar waste built up and began to accumulate in Waverly's cells, causing damage to her brain and body. As the doctor had already stated, there was nothing they could do.
The bad new wasn't over. Sanfilippo or MPS III is genetic. Matt and Shannon's son, Oliver, was an adorable one year old with chubby cheeks and a big smile. He liked Mickey Mouse Clubhouse and cuddled with his mom. What about him? When Oliver was born, Shannon and Matt had no idea Sanfilippo even existed, let alone that they already had one child afflicted with the terrible condition.
Oliver also tested positive for Sanfilippo.
Here's the cruel thing about Sanfilippo or MPS III; babies start out normal, happy, and healthy. This isn't a condition detected at birth. Parents watch their children grow and thrive just like anyone else. But then their children start to deviate from the parenting books. They become restless and hyperactive. In the second stage of the disease, a snowball effect takes hold and parents begin to see a rapid regression in both verbal and physical capabilities. It begins with small things, like toilet training, and progresses to the complete loss of basic functions like chewing, swallowing, and walking. In the final stage of Sanfilippo, the child eventually succumbs to infection they cannot fight.
Watching your child slowly lose the battle once must be devastating. Having to watch the same thing happen to your other child, knowing in advance that this is the year his little body is going to start showing concrete signs of breaking down, is absolutely unfathomable.
Shannon writes, "We are not sure how much time we have with them. The life expectancy for children with Sanfilippo A varies. The doctors have told us between 10-18 years is typical. I am not convinced there is enough time for the current research to save Waverly and Oliver. However, I would do anything to prevent another family from going through this heartache."
Instead of falling into the abyss, Matt wrote The Strange Tale of Ben Beesley. The premise was simple. He wanted to write a scenario in which his kids could win. Waverly and Oliver are featured in the book as the two main characters, who happen to be insects. Ramsey, the deadly spider, is the terrible genetic condition that Waverly and Oliver must defeat.
Being diagnosed with Sanfilippo is a double edged sword. On one hand, there's not millions of children affected by it and that's something to be thankful for. On the other, YOUR child or children do have it and will most likely die unless a cure is found. Because it's not a popular condition, Sanfilippo doesn't get much research funding, leaving parents to the task of finding ways to raise the money themselves.
When I think about the many things I spend my money on, how could I pass up actually contributing to something worthwhile? All proceeds from The Strange Tale of Ben Beesley go directly toward supporting research programs that could help Waverly, Oliver, and other children who are also diagnosed with Sanfillippo.
Matt and his family now live in Virginia. You can read more about Waverly and Oliver's story in Shannon's blog, Exploring Holland. Quotes for this post are in her introduction, with a more detailed account.
You can purchase The Strange Tale of Ben Beesley by clicking on my link or visiting http://www.benbeesleybook.com/ . There are other links on his site worth checking out as well.
