Matt McNeil is inspiring. Despite the fact that both of his children, Waverly and Oliver, share the same devastating genetic disease – MPS III or Sanfilippo Syndrome – he is filled with upbeat determination.
MPS III (Mucopolysaccharidosis III) is characterized as a metabolic disorder whereby the deficiency of an enzyme particularly important to the central nervous system causes delays in development and behavior. MPS III Type A is caused by a lack of the enzyme heparan N-sulfatase and is regarded as the most severe types of MPS III.
Recently, Matt published a book, The Strange Tale of Ben Beesley, about the tale of two bugs who are bitten by a villainous and venomous spider, and Ben the fly, who tries to save them.
In the following interview, Matt reflects on Sanfilippo Syndrome, his charge to find a treatment and cure for MPS III and his book which mirrors his hope for Waverly and Oliver who struggle through their mutual “villainous” disease.
I had what Sanflilipo gave us — a life and death struggle for the characters in the book to deal with. I am inspired by my kids and used the story as a proxy for dealing with their illness and what it might be like to try save them in a fictional version versus what I couldn’t do in real life. It has been another way of dealing with the grieving process.
GGP: When did you get the first diagnosis of Sanfilippo for your children?
My daughter Waverly is currently eight years old and she was diagnosed in March 2008. At a young age, she was a smart little girl, yet somewhere between the ages of two or three she started lagging behind her peers. We learned she had a hearing loss and assumed that was the cause for her delays. After three or four months of continuous speech therapy, her speech pathologist voiced her concerns that there might be something beyond a speech and hearing impairment.
We spent three weeks working with a geneticist at Children’s Hospital of Philadelphia. It was there we learned of Waverly’s diagnosis of MPS III Type A. Our son Oliver was tested a month later and was confirmed with the same diagnosis. Interestingly, Oliver was diagnosed at his newborn screening with a hearing loss. He was diagnosed with MPS III Type A – a year and three months later.
GGP: How are Waverly and Oliver doing?
Sanfilippo progresses in three different stages. The first sign of delay is development. We noticed a lagging behind peers. The second is when they become hyperactive; have restless sleep; verbal skills go down, and they have a harder time communicating. Lastly, the cognitive abilities falter. For example, Oliver is five years old and he has cognitive abilities that mirror that of a one to one and one-half year old. Waverly is entering the third stage – the slowing down where they lose speech completely and feeding issues. She currently has trouble swallowing and we are looking at getting her a feeding tube.
GGP: How has life changed?
Perspective has changed. We have really learned to focus on “finding joy in the little things in life.” Waverly and Oliver love riding carousels. Regardless of where we are the kids get to ride a carousel. If they were normal kids, we might say “no” to teach them about not always getting what they want. Yet, we know they are deprived enough – they can have what they want. It has been amazing to see how other people have become more sensitive to others in the community.
Where other families, those that are not parents of special needs kids, go out of their way to make Waverly and Oliver feel included and also convey that sensitivity to their kids. I have been blown away by how sweet some of the kids have been to ours. And I have become enlightened by the level of isolation that parents can feel and yet so touched by empathy from those who can understand without going through a similar experience first. The kids have helped to touch people to “become that.”
GGP: You wrote a book. When did you first get the idea to write the book?
The idea for a book I had back in college, where I had the twist of an ending and said to myself, “that’s something I want to write for my kids.” Years later, I started the book again and even then it didn’t feel right. The year my kids were diagnosed, I spoke with an artistic friend of mine; and, after I got off the phone with him, I dusted the story off and began to write for my kids. I finally had what was missing after all those years.
GGP: Where did the inspiration for a spider come from?
This little world of bugs. Spiders are a natural villain for the bug and alter the chemistry – two flies, Waverly and Oliver get bitten by a spider which mirrors the Sanfilippo in their bodies. Ben tries to save them by taking his friends across this garden to confront the lead spider. The book is also aimed at adults about trying to give your kids something you can’t.
GGP: How are you promoting the book and where will the proceeds be donated to?
The book is being promoted through its own website and is being sold through Amazon. Currently, we have a running tally of close to $5,000 dollars. The first royalties will be sent at the end of June and those monies will be given to the National MPS Society. We are hoping to see a push in their quarterly newsletter.
GGP: If you could give a message to all parents of children with MPS III Type A, what would you say?
As the Byrds band sang back in the 1960′s, “there is a time and season for everything,” and with MPS that message is incredibly clear on a day-to-day basis. Some days we grieve, pull away and cry and some days we cherish that our children are still here and make memories from that day. Some days we think of a time in the future when we will find a cure. My message is to embrace that – don’t feel bad for being in the season you are in.