Hello Everyone,

 

My name is Natasha Kaweski and I have MPS IVA (Morquio A).  I was diagnosed with Morquio syndrome when I was one and my brother, Damien, was three.  My parents noticed that Damien was not growing as most toddlers do, and so they took him to the doctors who then suggested that I also be involved in all the tests that Damien was having done.  It was through this process that both Damien and I were diagnosed with Morquio. My parents were initially told we weren’t going to make it past the age of five but I am now twenty four and am still alive! Unfortunately, my brother passed away when he was eighteen and a half, due to breathing complications.  I also have two younger sisters who are not affected by MPS.

I have had a total of seven surgeries in my life, the first when I was five years old and my most recent surgery was five years ago.  During my second neck decompression when I was sixteen, I had a spinal stroke.  After being able to walk into the hospital for the surgery I came out of the surgery a paraplegic, and had to re-learn how to do simple everyday tasks that most people don’t think about. It has been eight years since I became a paraplegic, and yes life can be a challenge some days.  But thankfully, with the help and support of my family and friends, I lead a happy and successful life.

I am now in the midst of pursuing my Bachelor of Arts degree in Geography and have almost finished that. I also have a part time job as a secretary at the church my parents and I attend.  Between both school and work my days are busy, but I still make/find time to do fun things, like going to the movies.

I am also a huge fan of the TV show ‘Supernatural’ and have been going to the official annual Creation Supernatural convention in Vancouver for the past three years.  I have had a blast at the convention and met lots of fellow fans as well as many of the actors.

 

 

Natasha Kaweski