Eddie Kimminau's Journal
RARE DISEASE DAY
Written Feb 27, 2014 7:16pmFriday, February 28th is RARE DISEASE DAY. This day is honored to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.Eddie's disease - Morquio Syndrome -is very rare. There are so many struggles that go along with a rare disease. We are thankful for the MPS society who has been our advocate and our hope. If you would like to help please visit Eddie's COURAGE PAGE.Thanks to Big Bend Elementary School and Section Elementary School for celebrating RARE DISEASE DAY - wear your TEAM EDDIE SHIRTS!!!!Again I have to say we live in the BEST community!
Written Feb 13, 2014 5:04pmWe are driving back from Eddie's infusion. Everything has gone smoothly this trip. Eddie is in good spirits. The drive was uneventful. We got to start his infusion earlier than expected. We got out of Delaware before the mayor closed the city-seriously. Tomorrow we will work on putting some weight on his healing ankles. Eddie also has a cardiologist appt in the morning which is a perfect appt to have on Valentines Day:). Then Eddie wants to make it to his Valentine's party at school.
Makena was an angel this trip. It was so good to have her with us. She was a patient loving sister during our 29 hours in the car and 2 days in hospitals. She was rewarded with lunch at American Girl today.
Brad was a rock and could become an over the road trucker after all the driving he has done-1700 miles.
Thanks for all the prayers. Eddie is safe and healing. Hopefully he will be walking with less or no pain soon.
Out of Surgery
Written Feb 11, 2014 1:36pmThe doctor came out and said that all went smoothly. The screws are out and Eddie is in recovery. We haven't seen him yet.
Hopefully we will see him soon.