Posts Tagged ‘McKenzie’


January 12, 2010

The plan to get McKenzie to Johns Hopkins has hit a major roadblock. McKenzie can’t get a medical release to fly to Hopkins.

No problem, you’re thinking. Throw the surgeon on an airplane and fly him to McKenzie. If you can’t bring Mohammed to the mountain, as the old saying goes, bring the mountain to Mohammed.

It doesn’t work like that – apparently there is medical equipment available at Hopkins that is not available at McKenzie’s location. And while it could be done, most surgeons would not want to go into a major operation without their operating room staff. A good surgical unit is a team, and the best teams practice together, they work together, and they come to the point where everyone can almost read each other’s minds.  So it seems that McKenzie is back to square one.

Good News for McKenzie!

January 10, 2010

The news is good! I learned via e-mail just a few moments ago that all the pieces of the puzzle have fallen into place, and McKenzie jets to Baltimore on Tuesday, January 12!

Good evening everyone… For those of you who have not heard, and I do apologize for not updating sooner, but we will be headed to Johns Hopkins Hospital in Baltimore, Maryland on Tuesday for McKenzie to have heart surgery.

Obviously the crisis is not over – there is still the prospect of a surgery ahead – but the plan is in motion. And most of it was orchastrated by people who may never have even met each other before:

Next came, How do we get to Maryland with McKenzie? —— I initially posted on her Facebook page that we were in need of a private airplane to take McKenzie to Maryland. We also were in contact with the local newspaper. The newspaper did a front page story on McKenzie and our need to get to Maryland. Through lots of kind people and many efforts, we have a flight to Maryland!!

…The community has really come together to make this happen for McKenzie, which without surgery, we would end up losing her sooner rather than later.

Quite a contrast from the day my parents rushed me to Johns Hopkins. Our pediatrician had set everything up, but they still had to get me there, and to do it they drove into the worst snowstorm in memory. And what does a Southerner know about driving in snow? It seemed like every other driver had buried their car in a snow bank, but we made it. Slow and steady wins the race – and rarely winds up skidding off the road.

The second time I needed surgery (1977) there were more resources to draw from, and The United Way helped pay for our airline tickets. When I almost bled to death (1988) we had people across the Southeast praying for us and willing to help. And there was no organization – one person picked up a phone and called a friend, who called a friend, who called a friend… and on and on.

Supposedly an e-mail can go anywhere in the world in eleven minutes or less. Hardly anyone had a cell phone in 1988, we had to wait until the early evening (local time) to give someone a chance to get home after work before calling and asking for help. We can communicate with more people, and do it quicker – and increase the chances that someone, somewhere, can make the connections that can help a child in trouble.

I often tell you how medicine is making great strides, and I’ve shown you some of those advances right here. But it is the people, the personal connections, that counts the most.


January 8, 2010

“All this has happened before, and it will happen again.”

This is almost like watching a movie and suddenly realizing it is about you. In February of 1967 my parents drove me from South Carolina to Johns Hopkins Hospital in Baltimore, Maryland for life saving heart surgery. I was 5 months old at the time.

I quit watching the football game tonight and came down to my room. As usual, the first thing I did was check my e-mail.

My daughter has neonatal Marfan Syndrome which is extremely rare, and McKenzie is the rarest of the rare. If she does not have surgery to repair her heart, we will lose her. Currently we are needing to have her evaluated by the doctors at Johns Hopkins in Maryland.

Oh, shit.

And then I remembered something. I did a quick Google search to confirm my memory: One of the Marfan’s Syndrome experts at Johns Hopkins is Dr Vincent Gott… the man who operated on me back in ’67. I don’t know if he is still working or has retired, but that’s too much of a coincidence.

This is too spooky.

I am contacting numerous people to see if anyone has any connections to private air planes that would be able to accommodate our flight. Without the surgery, my baby will not be here…. surgery itself is risky.

So we would need to fly from Tallahassee to Baltimore, Maryland (Johns Hopkins Hospital). We would need a plane to fit 5-6 people and have access to use a AC adapter or Car Adapter to plug in her equipment. Ideally I would like to have a non stop flight and not have to switch planes..

I joke about having a private jet named Heart Force One but we all know that is not true. The plane is a gimmick – hopefully it makes you smile, and if you ever do see a red jet, you’ll think of the Funky Heart and how more and more people are living with a Heart Defect. If I had an airplane, it would already be heading to Florida to grab McKenzie and fly her to Hopkins.

So I am asking you – Do you have access to an aircraft and are you willing to transport a sick child? If the resource is available to you, do not contact me. Go directly to McKenzie’s Facebook page and offer your help there.

UPDATE January 9, 2010 11:30 PM Eastern:

Things are happening, and it looks like the flight may actually be coming together. A local CHD leader posted on McKenzie’s Facebook page that a plane and pilot are available and details are being worked out!