HI Meegan !
Glad to see you here. Thank you for sharing your story and pictures w/ us. You have taken a strong step in moving forward now even further. Congratulations!
My daughter is the PWS member of our family. She also has KT ( vascular syndrome ) in her left left and torso- She had a blood clot around the age of 9 , the KT was diagnosed at that time.
She is now 18, a healthy girl and doesn't let the PWS or vascular issues hold her back! She's been an all star competitive cheerleader, we've travelled the nation and she's moving on with her life now in Junior college , work and her goals.
SOOO glad you were able to attend the conference. Wasn't that just wonderful?? We attended in 2004 and will attend again one day -- just no clue when. We have met some of the best friends one could ever have thru the PWS ( www.birthmarks.com
) support list- I even email w/ several folks on a regular basis, We've shared marriages, births, blues, and happy times all online !
Thanks again for sharing. Stories like yours are always needed to keep that encouragement and inspiration in the air for families!