Posts Tagged ‘Marfan’s syndrome’


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!