Van Alexzander's
Adventure & Medical Website
You are entering Van Alexzander Downey's Website
"Dwell on the could haves,
we must not. Focus on
the solution, we must." ~ Master Jedi Yoda
Van Alexzander Downey Born: May 2nd 2007
Van is "special" or so we keep being told.
Although I think he is special for other reasons on his own :) Van has a rare Vascular Condition called CMTC or Cutis marmorata telangiectatica congenita in which we were told 200 cases have been reported since 1922. This Condition comes with many complications that may effect him in many ways. The most visual is what appears on the skin like a "birthmark". Where as most cases are either Locialized (meaning on one area) or Generalized (means all over) Van's in the past was only present on the left side of the body (full left leg, areas on arm, hand, shoulder, and back, and forehead) which gives him a high risk for Brain, Teeth, and eye issues on the left side and many more complications, Please see the CMTC page for more information, but since then signs of CMTC has recently shown up on the right arm and leg in minor areas and doctors are confused with this as usually CMTC birthmarks fade with age and new areas don't usually show up. While the CMTC was diagnosed at two days old, Van also has another condition diagnosed on Oct. 25th 2007 called Complex Hemihypertrophy (one side of the body has overgrowth including organs), and recently diagnosed with Crossed hemifacial hyperplasia (one side of the face,skull, jaw, teeth, brain etc. has overgrowth) on Nov. 9th 2007. The Hemihypertrophy was noticed by us first and has been getting more noticeable as he grows. Course we didn't know what we were noticing, just a different in his leg length and girth. The length isn't totally noticeable when you look at them, you have to pull them straight to see it, or you can tell when he is in his jumper saucer, as one foot is flat footed and the other he is on his tippy toes. Right now Van's Leg Length Discrepancy is 1.5 cm (Left leg being shorter). We are told that it will get worse as he gets older. His feet are different sizes as well. As of Dec 4th, Van is now being evaulated or "watched" for four other conditions, one is Hemi-Atrophy of the Left Side, one is Beckwith-Wiedemann Syndrome (BWS) , one is Macroceohaly-Cutis Marmorata Telangiectatica Congenita syndrome (M-CMTC) and the last Hirschsprung's Disease (which some complications were noted of this at birth) and a Biopsy of the intestines will be done the first of the year. Van also has a condition called Marcus Gunn Phenomenon in the left eye. We will keep you updated as we perform the test necessary to officially diagnose him with this conditions and/or to rule them out. So Stay Tuned and read the blog for Doctor and appointment updates.
We have recently found out from the Brain MRI that Van does have Atrophy of the left side of the Brain and vascular anomolies on the Brain, how these things will effect his future only time with tell.
This site is to help family and friends understand what is going on with Van. We would like you to visit the CMTC & Hemihypertrophy links on this site so you can see and understand what Van is facing. If you have any questions afterwards please ask and we will answer them the best we can. We have provided as much information as we can, and updates as we go along. This is all new to us too, so we will be learning together. We have also added some fun photos of Van so you can watch him grow. Please watch the Blog for updates on Van's condition. We will keep it up to date as much as possible. If you would like to volunteer your time or make a donation please see the Van Downey Medical fund link or contact us at the email below. Please scroll down this page to check out more information like how to join Van's Mailing list, Medical Terms used on the site, and Contact information. Thanks for your Support.
If you would like to be Notified when changes, new information, photos or blog post have been made to this website, please fill in the box below and you will be added to Van's Mailing list. All email addresses will be kept private and no one will see them but me. Thanks!
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Below is a Link to the CMTC Site in the Netherlands, Click on the Picture to Visit the website:
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This is a List of Medical terms you may have seen or we may have talked about through-out the website, If you would like to learn more information about any of them, just Click on the word and a page will open explaining them in more detail.
Crossed Hemifacial Hyperplasia (PFD)
Contact Information:
Email:
Address:
The Van Downey Fund
P.O. Box 309
Manquin, VA 23106
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