MY SON JACOB IS 11 YEARS OLD HE HAS A PWS AND AVM BEHIND HIS EYE AND THEY THOUGHT HE HAD STURGE WEBER BUT HE HAS NEVER HAD ANY SEIZURES. HE HAS HAD 8 LASER TREATMENTS AT SHRINERS BURN HOSIPTAL IN GAL.TX. BUT I REALLY SEE NO CHANGE . HE HAS HIS EYES CHECKED EVERY 2 MONTHS. THEY DID A ANGIO GRAM WHEN HE WAS 5 AND THE DR TOLD ME AS LONG AS HE HAS NO SEIZURES THEY WOULDNT TOUCH IT . WELL HE HAS GLAUCOMA HAS A LEARNING DISABILITY JUST READING. BASICALLY I NEED TO FIND A DR. THAT WILL NOT LEAVE ME WITH WHAT IFS .IT HAS BEEN 6 YEARS AND I DONT KNOW WHAT TO DO WHAT IF HE HAS A SEIZURE AND HE IS AT SCHOOL OR JUST AWAY FROM ME I CANNOT GET ANY DR TO HELP MY SON IN OK. IT HAS TO BE SEEN OR TREATED THERE IS NOWAY I CAN GO ON LIKE THIS.
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate medical professionals for evaluation and/or treatment and provides informational resources as well as sponsors physician education, research, and programs that promote acceptance for living with a birthmark.
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