Written by Hannah Gilhuis in the spring of 2014.
Imagine if you couldn’t express yourself in the way others around you could.
That is what it is like for my siblings Rachel and Mathew, who are living with Sanfilippo Syndrome. How this disease works? Well we all have enzymes in our bodies. Some are supposed to carry away all of the left over parts of cells to be reused. It’s kind of like a recycling truck, only with Rachel and Mathew one of the enzymes is not working and the garbage is building up in their bodies. This build up of un-used material is taking away their abilities to walk, talk, and even move. I also had an older sister Sarah who passed away 7 years ago at age 13. I miss her very much and just like it took my sister away, Sanfilippo Syndrome is stealing Mathew and Rachel away Little by Little. They both will lose their ability to walk and have to use a wheelchair. Rachel is already a bit unstable on her feet. Eventually they will forget how to swallow. Already Rachel takes medicine 3 times a day to help her swallow properly. Sometimes I complain because Mom & Dad spend a lot of time with Rachel & Mathew. They get to steal the TV ALL THE TIME! I think I know EVERY BARNEY EPISODE by Heart!!!
But then I think of all of the things that they can’t do or may never be able to do, like sleep over at a friend’s house, or go on a roller coaster. Then I remember that they are sick and that makes me sad, so I sit with them in their room and watch their Barney with them.
I Love them, and even though they can’t tell me, I know they love me too. And someday they will see their sister Sarah up in Heaven. To learn more about Rachel & Mathew’s disease you may visit the Canadian MPS Society at www.mpssociety.ca. Thank you for letting me share with you today about Sanfilippo Syndrome and how it impacts my family.
Hannah, Nathan and Mathew lost their sister Rachel to Sanfilippo in August of 2018.