About Me

Welcome to Clarity's Story!
Hi! I’m Lisa (aka "Mama") I made the decision recently to create this page in hopes of keeping all of our amazing friends and family updated on Clarity's life. I get asked on a daily basis details about Clarity's status of health, struggles and victories. We hope this is the perfect way of keeping everyone "in the loop". The coming year is shaping up to be filled with change and adventure. Clarity will be having numerous surgeries in hopes of giving her better hearing, voice and a stable airway aside from her tracheostomy. Patrick (aka "Daddy") and I thank you for taking the time to read about our lives and welcome your positive thoughts, visualizations and prayer.
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Hi! I’m Clarity.
I have a great life here in the Santa Cruz Mountains, which is on the outskirts of the town of Los Gatos in California.
Most of my family live locally, and I love spending time with them. I also have a great group of friends that often look after me. Most people tell me I have a zest for life and a funny sense of humor. While others think that I am incredibly shy. I spend most of my time being shuffled around in mom’s car from one place to another, although I prefer to be home playing in my beautiful mountain backyard with my dog, Primo.
Now that I am 5 years old, I’m starting to understand that I am kind of special. So, what makes me so unique? I was born with Velo Cardio Facial Syndrome (also known as DiGeorge Syndrome or 22Q11 Deletion) I have 14 doctors and 4 therapists who I visit regularly. They take VERY good care of me. Yup, everyday is a new adventure and this is my story.
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Here is a current list of diagnoses:
Velo-Cardio-Facial Syndrome, Laryngeal stenosis/congenital laryngeal webbing(trachea), Tracheostomy dependent, Atresia/microsia (ear), narrow ear canals, hearing loss, suppressed immune system , mildly asymmetric face, right-sided aortic arch(heart), vascular ring (heart repaired), scoliosis(back), juvenile rheumatoid arthritis, enamel missing on teeth, 100% gastrostomy tube fed and Pat's Fred Flinstone feet...
Whew! And you wouldn't even know it if you saw her walking along the street!

PLEASE CONTACT ME AT: lisaandbean@gmail.com