CMTC Four Letters That Changed The World

We declare that the copyrights to this song belong to Slade. Fantastic home video of Luke pretending to be Noddy Holder and Santa at Christmas 2005. Enjoying all his Musical toys. Music by Slade…00:04:24 Added on 14/01/2010

CMTC Four Letters That Changed The World

Luke is a lifelong member of a very exclusive club. Our happy go lucky ten year old son is the only member in Marbella in fact, possibly Spain for that matter. But he’s far from lonely. And although he never applied for membership, filled in any forms or has ever been asked to pay a membership fee he has paid his dues in many other ways as a patient of a rare congenital disease called Cutis Marmorata Telangiectatica Congenita or CMTC.

A photo says a thousand words and myself and my wife Jayne are truly blessed with two terrific sons in Luke ten (pictured) and Benjamin his seventeen year old brother. Arranging family photos at Christmas is a pastime parents count as a blessing but for a CMTC sufferer it can sometimes be a mixed blessing.

First described by pioneering Dutch paediatrician Cato Van Louhizen in 1922 with CMTC the arrangement of the thousands of tiny blood vessels developing in the body are interrupted. Qualified resources and some useful links for parents are included at the bottom of this article. Here what we can say is that in some cases the condition is very mild, purely cosmetic in fact and requires absolutely no treatment. These milder cases show up as a mottled or marbled skin, especially when your child is cold or hot. This marbelling is one feature which contributes to the Latin name of the condition Cutis Marmorata Telangiectatica Congenita, meaning a “marbled skin at birth”.

Extremes of temperature bring the milder more secretive form of the condition to our attention. Medical complications and associated conditions however deliver far more serious variations. These can include asymmetrical growth, muscle atrophy and entire limb atrophy where a patients head, arm or leg on one side may be of different size, circumference or length to the other.

Much of the credible information today found published on-line originates from another parent of a CMTC sufferer in Holland, ironically the same place where seventy years ago Dr. Van Louhizen had first described the disease.

That parent is Lex Van Der Heijden who financed and set up a small website which over the last ten years has grown to help shed more light on the condition. Its true parents should seek medical help and avoid self diagnosing but in an information vacuum you are sometimes forced to look for your own answers. A decade on what Lex is doing on-line at www.cmtc.nl has developed into what is now widely recognised as the global platform for parents and patients affected by CMTC. And most of that progress has been self funded.

You see while CMTC can be complex and racked with medical complications, some being fatal, it’s a condition that is neither cool nor common. And in a world often sadly driven by economics that’s a bad mix. CMTC is not medical gold dust like a cure for cancer would be to pharmaceutical giants already funding major global research programs into causes and cures. For CMTC there is no cure. In fact so far there is no known cause. So there is no money and little publicity. It’s a journey into the unknown. Four letters that form the points of a compass guiding the lives of the few hundred reported cases around the world.  Including Luke here in Marbella.

Quietly getting on with the job of living with CMTC Luke is a brilliant soul who shines brightest by the inspiring example he unwittingly shows while touching the lives of others, young and old. His curious youthful ideology and spirit needs no book deals, articles or headlines. Like the best things in life it can’t be bought or bottled.

Bilingual, articulate and an academic young student. A loving son, brother and proud Malagueño. He still has the same quiet, courageous yet modest and friendly demeanour he had the day Jayne and I collected him from intensive care in Málaga’s Dr. Gálvez Hospital.

The psychology of living with a positive outlook on life is not lost on CMTC people and regardless of adversity when you have so many positives to celebrate and focus on as we do as parents of our sons Luke and Benjamin then the best advice we can  offer to parents in a similar situation is to share your story, fears or experiences with others, as I have here in a small way, and below are just a few links to CMTC sites where you can do just that.

For Luke the occasional complication CMTC still brings with it today, like a prolonged bleed from a tumble or scrape with the playground floor, serves to remind us at this time of year especially love weighs more than gold.

USEFUL LINKS

CMTC
www.cmtc.nl

CMTC forum on Facebook
https://www.facebook.com/#!/group.php?gid=129910120379112