THE MIGHTY QUINN:My Journey With PHACE Syndrome,Hemangiomas,Stroke and Autism

The PHACE Community serves to meet the support needs of familes and individuals living with PHACE Syndrome. Our Community strives to raise awareness and support research and fundraising campaigns aimed at the treatment of PHACE Syndrome and Vascular Anomalies. We are made up of a team of volunteer parents which serve as community coordinators and advocates.Our community maintains a close partnership with the National Organization of Vascular Anomalies (NOVA) a non-profit organization devoted to the support,education and advocacy of families living with vascular anomalies. NOVA has led the way in PHACE advocacy and support of our members. Community Director Jen Duncan is a volunteer PHACE Family Advocate with NOVA.

This site is for friends, family and anyone else interested in how Arielle is facing PHACE Syndrome. It is dedicated to all those born with birth defects, or encounter other trying times. It honors the powers of faith, modern medicine, and belief in the human spirit - and the wondrous miracles the combination of all three can accomplish.

Mom and dad have this site so they can keep everyone in the loop. We are very thankfull that everyone has been so loving and supportive! I am a very special little girl. I was born with P.H.A.C.E. Syndrome.I needed open-heart surgery when I was six weeks old!My family was scared but I showed them just how strong and brave I am! I am doing great now! I am a very attentive little girl.I am a busy girl and am growing so fast. Hopefully this site helps everyone keep up with me:)

At 4 weeks old & after major heart surgery, Elyse was diagnosed with PHACE Syndrome. A condition that describes a group of findings including: P - Posterior fossa malformations; H - large cervicofacial Hemangioma; A - Arterial anomalies of the head & neck; C - Coarctation of the aorta & cardiac defects; E - Eye anomalies; S - Sternal cleft. Elyse has: H - A - C

The mission of the Childhood Stroke Awareness Campaign includes: educating the public about pediatric stroke (this includes teachers, school administrators, classmates, family members, friends, and the general public) educating medical personnel, therapists and legislators about pediatric stroke increasing federal research funding focused on pediatric stroke and it's affects on the child educationally, socially, emotionally, and physically increasing awareness on how pediatric stroke affects families as a whole helping families find support resources when their child has been diagnosed as a pediatric stroke survivor raising funds to support pilot research projects focused on pediatric stroke