Wow, I can't believe we've just about hit the $10,000 mark! That's twice what I ever anticipating attempting to raise!
Thank you all for your incredible generosity and encouragement. I'm updating this message while I'm in flight on my way to California for a short visit to Yosemite...then RACE DAY in Tahoe! I can't believe where this journey has taken me. I truly feel I am blessed with the most wonderful friends and family and I thank you all for taking the time to donate.
The PHACE Syndrome family conference--1st ANNUAL might I add, thanks to my sister Adriane and brother in law Lawrence--took place last weekend and was a huge success. Families and physicians from around the world took part in the meeting held in Milwaukee. This event made such a difference to families who have had few resources while trying to better understand and treat their child's condition. http://www.novanews.org/events/phace-syndrome-the-families-the-physicians-and-the-facts.html
Again, thank you all! Expect an update post race...wish me luck.
All my love,
Sarah
Thank you to everyone who has donated and helped me hit my original goal of $5,000 in less than a month and then a second goal of $7,000 just a few weeks later! I'm overwhelmed and forever indebted to you all. I cannot tell you how much your kindness and support means to me throughout this journey!
Tahoe will be my most challenging race to date. Here in Charleston--I'm training at about 100 feet elevation and Lake Tahoe averages around 6,200 feet. However this journey doesn't come close to the ups and downs my baby nephew has faced in his first year. This race is for Joseph. Joseph Arthur Baylis was born in October of 2009 in Milwaukee, Wisconsin. He is such an amazing little guy and has brought our family such laughter and joy. Joseph is also a fighter.
At birth, the doctors at Children’s Hospital of Wisconsin diagnosed him with a sternal cleft, which will be surgically repaired around one year of age. A few weeks after he was born, my sister Adriane discovered that Joseph had a hemangioma (a birthmark made of abnormal blood vessels) growing on across his lower lip and cheek. He was brought to Children’s Hospital of Wisconsin to meet with vascular anomalies specialist, Dr. Beth Drolet, who was able to provide guidance and treatment for his hemangiomas and diagnosed him with PHACE syndrome.
PHACE syndrome is the association of a large hemangioma usually on the face or neck, in combination with one or more other abnormalities. Every infant diagnosed with PHACE syndrome has different medical needs. Some have mild symptoms while others have more severe symptoms.
Joseph began to have difficulty breathing at around 2 ½ months of age. After additional discussion with his doctors, there was strong suspicion that he had an internal hemangioma underneath his vocal cords which was starting to close off his airway. Thanks to his parent's quick actions, Joseph was brought back to Children’s Hospital of Wisconsin where a team of doctors were able to confirm the presence of the internal hemangioma, inject it with medicine to shrink it, and get Joe’s breathing back to normal. Within a week, he was back home playing in his bouncy seat and batting at his toys. He continues to take medicine to keep his hemangiomas from growing and eventually they will run their course and shrink away with time.
Joseph continues to see his specialists at Children's Hospital of Wisconsin every few weeks for check-ups. Our family is truly grateful for the many dedicated doctors he has seen and they kind of care he has received. We're also aware that not all children have the opportunity to receive such specialized treatment and it is my hope that the money collected will contribute to research which will lead to better diagnosis and treatment of PHACE syndrome and vascular anomalies.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too! To avoid part of the donation going to credit card processing fees, consider donating by check. Please make checks payable to:
Children's Hospital of Wisconsin Foundation
Specify in the memo line:
Vascular Anomalies/PHACE Fund
Send to:
Sarah DeMarco
3106 Palm Boulevard
Isle of Palms, SC 29451
Please click here for more information on PHACE syndrome or feel free to email me any questions: srdemarco@gmail.com
Thank you again!
All my best,
Sarah