Friday, February 22, 2013

We're Okay With Rare

It just so happens that on Monday bright & early Jeremy heads in to Madigan for another laser surgery / eye exam under anesthesia. I have lost count now of how many laser treatments & eye exams he has had since our world changed when he was born in October 2000. I know some medical moms keep up with it all, I choose to celebrate that each procedure is over and move on to the next.

Sturge- Weber Syndrome is considered a Rare Disease, which just so happens to have it's own day of recognition on February 28th. The very first ever Rare Disease Day was started on February 29,2008 in Europe. Eventually the US caught up and now we recognize all those rare diseases around the globe as well. I hope by reading my Blog & getting to know our family you learn a little more about Sturge-Weber Syndrome then you knew before you logged on to the web. If your like me when Jeremy was born I had never heard of SWS. I had seen a young man around my college who had a PWS just like Jeremy has, but I had no idea what it meant. I thought it was just a birthmark. I had no idea that not very many people had SWS or how much it would truly impact our lives from that moment forward.

A little short paragraph that can get you started on your journey to learn more about SWS:
Sturge-Weber Syndrome is a rare-disease that affects less than 5,000 individuals every year. The predominant hallmarks are a port-wine birthmark over one or both eyes, glaucoma and seizure activity. Although not every individual has all three hallmarks most do. The range in severity and ability is unique to every individual: some are born blind or go blind, some have brain surgery to stop seizure activity and experience body and speech weakness as a result, some have low mental functioning while some have Master's and Doctoral degrees, some wear make-up to hide their birthmark while others wear the birthmark proudly. Just as every person is different so are Sturge-Weber patients.

Thank goodness we have Jeremy's pretty well controlled with his medications. We do the hospital & doctors like they are a normal activity . We are friends with other families who speak the medical language & don't think it's crazy when I cancel at the last minute because something came up with Jeremy. We are Okay with being "Rare", because we think that Jeremy is a one of a kind young man. His smile & laughter are infectious to all he is around. Those who take the time to get to know him & move past the outer appearance are blessed to have him in their lives. I won't count every doctor's appointment or surgery but I will take a moment to help spread the word about SWS. These amazing kids, teens, & adults are so strong that they deserve their own day. I hope you take the time to learn more & spread the word. Just because they may look different or have their own version of normal doesn't mean they are any less of a person or have any less love of their lives.

1 comment:

Jen said...

What an awesome son you have. :)