Saturday, July 14, 2012

Update on Daniel since the last post. He finally shook the bug, but it did take going to the antibiotics to do it. We really didn't want to go there since he at risk for MRSA, and every antibiotic used now could make it that much harder to fight a bug down the road, but for this bug, it was necessary.

This post comes with a mix of joy & sadness. On June 20th a beautiful little boy named Danny in the UK, who suffers from one of the most severe forms of Marfan syndrome, Neonatal Marfan Syndrome” (NMS) had heart valve surgery. For those not familiar with it, it is a severe and rapidly progressive form of Marfan Syndrome. Cardiovascular issues can be difficult to treat, causing early mortality in some cases. Danny was in need of heart surgery but not expected to survive according to almost every expert, yet not only did he breeze through surgery but was ready to step down out of the PICU less than 3 days after surgery & is now home & doing great!! So much for the doubters!

The sad side of this came on June 22 when an online Marfan friend named Justine, also in the UK, passed away at age 42 in her sleep. There was no warning, she was just gone. I had only recently "met" her, but she seemed like a bright & witty woman who was trying to live life to the fullest, despite her condition. Our deepest sympathies go to her family... It is also a sobering reminder of Marfan's.

Sunday Daniel turned 49. Not a big milestone for most (other than he is soon to enter his 50's) but 17 years ago when he was diagnosed with Marfan Syndrome we were being told that although life expectancy were beginning to climb, that many were still not making it past their 40's & 50's. Thankfully proper treatment, great support & the blessings of God have come together to get him to today. We know so many examples of friends making 60, 70 & a few beyond, but we also know NO ONE is guaranteed tomorrow, Marf or not. Another non-Marf's friend's daughter & grandchild were in a car accident today, they are OK, yet another CDH family just lost their little baby this morning... Why someone survives to see another day when it could have gone the other way, sometimes it's luck & circumstances, but sometimes we just don't know. That's why it's important to make the best of the time we have as much as possible, and as best we can with what Marfan's gives, live it to the fullest!

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