MPS Awareness Day

Today I wanted to share an excerpt from a facebook note I wrote over a year ago. There is a very important day approaching and I wanted to share it with you, my friends.

I met Waverly and Oliver briefly, many years ago. Jeff and I were either engaged or newlyweds, I can't recall for certain. What I do remember is sweet baby Oliver in his carseat, all ready wearing his little tiny hearing aid. And a beautiful, doe eyed little girl named Waverly. Her lovely brown hair swishing around her as she ran around the room, laughing, singing and blessing everyone with her sweet smile.  They were still undergoing tests at that time. Something was wrong with Waverly, but no one knew what it was yet. Their parents had come in to visit my sister in law and mother in law while in town for Thanksgiving. The visit lasted no more than an hour, but I vividly remember those lovely little faces. And I remember their parents, Matt and Shannon, glowing with love and affection for their children. 

Not long after this brief visit, we heard the devastating news. Waverly had been diagnosed with Sanifillipo (or MSPIII), a horrific, nightmare of a disease that steals the lives of children. Essentially, their bodies are unable to break down sugars and a build up occurs inside that causes them to regress. Losing their speech, movement and cognitive abilities until they eventually die. I still tear up every time I read a description of this disease. Terminal diseases are always shocking, especially with children... but there is something especially harrowing about Sanfillipo. Pieces of children, their personalities and laughter falling away bit by bit, the heartbreaking stomach churning regression into death. I kept seeing Waverly's face and her beautiful smile and couldn't believe it was really happening to them. Eventually, the news came in that little Oliver had Sanfillipo as well. I felt angry and devastated...and I had only met them once. I remember thinking of their mother, Shannon. I found myself praying for her and her husband all the time. I prayed for their memories. That God would bless them with many beautiful days full of laughter and golden childhood memories.  That every good day would be stretched out and that God would bless them with unexpected moments of joy. 

Over the years we have faithfully read Shannon's blog, every update is read and I pray for her often. After my own children were born I began reading her thoughts in a new light. The horror of the disease will never be fully real to me because I am not the one with them each and every day, caring for them, helping them, fighting for them. Watching them and the clock, knowing what the coming days will bring. It hurts to think of what they go through as a family. While I love seeing those happy pictures, the good memories of days in the park and birthday parties, I find myself weeping when I read that one of their children has lost yet another ability.


 I hate Sanfilllipo. These two beautiful children who are wonderful, brilliant little beings no matter what their bodies have been hindered with...I want to cry when I think about what has been stolen from them and what they suffer through every day. How confused they must feel… 

We have learned from Shannon that there are certain diseases out there, Sanfillipo being one of them, that have been termed "orphan diseases." These are the rare diseases that are not common enough to merit big dollars from pharmaceutical companies to search for cures and therapies. Basically, who would want to invest millions of dollars for medicines only a few would buy? This means that the parents of children with Sanfillipo are the ones fighting for a cure, fighting for their children and fighting for future children burdened with Sanfillipo.

This is one of the things I admire most about Shannon and Matt. They works so hard each and every day to give their children the best possible life. Shannon does everything she can to keep their skills and functions in working order. I imagine that just doing those things is exhausting, but they go even further and take up the fight for finding a cure. At this stage in their children's Sanfillipo, its difficult to say whether or not Waverly and Oliver could benefit from any therapies or cures found. But they have the hope that one day families will be told, "Your child has Sanfillipo....here are the treatment options...” 

May 15th is MPSIII Awareness Day. We have been out of town for this day three years in a row and will be out of town again this year. But we always find some way to mark the day. Usually with purple bracelets or purple shirts. This year, we want to take the time to help raise money. I haven’t decided what we will do yet, but I do know that we will do it together. The boys participation will result in more effort and less money made, but their involvement is so very important. They know who Waverly and Oliver are because we pray for them often. They know these beautiful children are sick and that they need to find a cure.  And so, even if it takes a few hours longer, and even if its not on the the exact Awareness Day, we will be doing our part to help find a cure. 

Here is a website with more information on how you can pitch in.

Waverly and Oliver’s father, Matt, has written a children’s book, every cent of it going towards finding a cure. FInd out more information about the book here. It will be released on May 15th of this year! Encourage your local schools to buy this book or donate one to your local library!

Even if all you do is wear a purple ribbon, it will achieve the monumental task of spreading awareness.  Thanks for reading!