We are constantly reminding ourselves to live one day at a time. Sometimes this is easier said than done.
In February, we finally got to see Dr. Ashizawa, a neurologist who specializes in Myotonic Dystrophy, new to the University of Florida in Gainesville. We found him because he serves on the MDF board of scientific advisors. So, Dave, my sister Jenny, Kate and I headed to his clinic on a Friday afternoon, while Charlie played at Glamma & Jack's house. While I won't get into all of the specifics of the appointment, I can say that we left with a real sense of having just talked to an EXPERT...the first doctor that knew EVERYTHING about this disease. The appointment was filled with honest information, some of which was hard for us to hear, but we left with great hope for our family's future. We could tell this man was dedicated to helping the Myotonic Dystrophy community and to finding a cure.
About a week later, my dad's DNA test results came back with a positive diagnosis for the disease. While we were glad to find the source of the gene, it was still difficult to come to the realization that my dad had it and that I had it too. We are ever so grateful that my dad's symptoms are minimal and that is a big thing since he turns 70 in April.
Soon after this, we decided that we would unite as a family and fight back against this disease! So, we have decided to throw a BIG BIRTHDAY BASH to celebrate "Grandpa's 70th Birthday and Kate's 1st Birthday" and put a fundraising purpose behind it...Research dollars for the Myotonic Dystrophy Foundation! We are so excited about this kick-off to our fundraising adventures and can't wait to celebrate with all of our family and friends on April 17th. If you would like to make a donation to our cause, we would appreciate it!
In February, we finally got to see Dr. Ashizawa, a neurologist who specializes in Myotonic Dystrophy, new to the University of Florida in Gainesville. We found him because he serves on the MDF board of scientific advisors. So, Dave, my sister Jenny, Kate and I headed to his clinic on a Friday afternoon, while Charlie played at Glamma & Jack's house. While I won't get into all of the specifics of the appointment, I can say that we left with a real sense of having just talked to an EXPERT...the first doctor that knew EVERYTHING about this disease. The appointment was filled with honest information, some of which was hard for us to hear, but we left with great hope for our family's future. We could tell this man was dedicated to helping the Myotonic Dystrophy community and to finding a cure.
About a week later, my dad's DNA test results came back with a positive diagnosis for the disease. While we were glad to find the source of the gene, it was still difficult to come to the realization that my dad had it and that I had it too. We are ever so grateful that my dad's symptoms are minimal and that is a big thing since he turns 70 in April.
Soon after this, we decided that we would unite as a family and fight back against this disease! So, we have decided to throw a BIG BIRTHDAY BASH to celebrate "Grandpa's 70th Birthday and Kate's 1st Birthday" and put a fundraising purpose behind it...Research dollars for the Myotonic Dystrophy Foundation! We are so excited about this kick-off to our fundraising adventures and can't wait to celebrate with all of our family and friends on April 17th. If you would like to make a donation to our cause, we would appreciate it!
So, here we are....trying to live one day at a time, but still planning for the future!
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2 comments:
Love the action shot of Char laughing in Kate's face. I miss that monkey so much!
Kiss and hug them both for us.
I am thrilled that you have found an expert in Florida! Seems like a "God moment" to have been led your family to him. Not that I am surprised, but I love the fact that you have decided to fight! Your dad must be so very proud of you all! I know I am. dayle
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