A Fundraiser for Vascular Ehlers Danlos (vEDS)
by Christian Oviedo
On February 15th, 2016 my then 7 year old son Christian Oviedo (now 8 years old) was diagnosed with Vascular Ehlers Danlos (vEDS). vEDS is a "life threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile".
Christian is currently involved in two research programs. One with the Texas Children's Hospital, vEDS reseach, pediatric cardiology department and another via University of Texas-Houston-Health Science Center department. Though he hates being poked & prodded he is hopeful that one day there is a cure for vEDS because there currently isn't one. C's one of those kids that likes to do what he can do to help and takes action when he can.
C had a vision for a shirt to help do his part to raise awareness. With the help of our friend Mars Sandoval at Syndrome Studio a shirt has been designed to raise much needed awareness for vEDS.
vEDS T-Shirt
If you would like to help C raise money for his cause you can do so by purchasing one of C's shirts.
Shirts will be printed on a soft cotton T-shirt.
Proceeds will go the Texas Children's Vascular Ehlers-Danlos research, Pediatric Cardiology department. Let me know if you'd be interested! Also, please feel free to share this.
$15 for adults, $10 kids
+ shipping.
Shirts will be printed on a soft cotton T-shirt.
Proceeds will go the Texas Children's Vascular Ehlers-Danlos research, Pediatric Cardiology department. Let me know if you'd be interested! Also, please feel free to share this.
About vEDS
Unpredictable ruptures of arteries and organs are the most serious complications of the Vascular Type of Ehlers-Danlos Syndrome. A torn artery can cause internal bleeding, stroke, or shock, and is the most common cause of death in patients with this disorder.Although serious problems are rare in childhood, more than 80 percent of patients experience severe complications by the age of 40.
Please keep in mind that the Vascular Type of EDS is extremely hard to diagnose. We are beyond fortunate to have found this diagnosis at Cs early age.
Please keep in mind that the Vascular Type of EDS is extremely hard to diagnose. We are beyond fortunate to have found this diagnosis at Cs early age.
Wear Red Day May 12th
Wear Red Day was launched May, 2015 by Annabelle's Challenge, a Manchester based, rare disease charity in 2015 to raise social awareness of Vascular Ehlers-Danlos (vEDS). We encourage people to wear red and post a photo of themselves on social media using the hashtag #red4veds. This year, Wear Red Day will be held on Friday, May 12th 2017!
Sponsors
