The story of Halle

Halle was born in February 2010 and there were no signs during her mom’s pregnancy that anything was not quite right. It wasn’t until her two-month well child check up that things seemed amiss. She wasn’t making eye contact and her limbs were very stiff. After an EEG, a hospital stay, and many months of trying to get a diagnosis Halle was loosely diagnosed with mitochondrial disease and doctors speculated that she might live to be around five! Now – armed with a geneticist, neurologist, pulmonologist, opthamologist, sleep specialist, cardiologist, pediatrician specializing in medically-complex children, orthopaedist, and many therapists, Halle continues to defy expectations at the age of 12. Her life has been on of the utmost bravery. How many 12 years olds have had countless EEGs, so much bloodwork, many long hospital stays, been air lifted, struggled to breath, and yet shown a will to live that makes her a role model for all humans. Halle does not communicate in any traditional way. She is not able to walk or talk. And yet she snuggles and loves with the greatest intensity. She loves to be held. She loves to be part of her family. She continues to face difficult circumstances and choose to be part of the world. She is a brave warrior, and also a teacher. Those who have gotten to know her have learned to much from her. Her willingness to stand in the face of complex medical situations and keep going serves as a model for everyone. She has taught us all that what matters in the world is: love + community. She has brought so many people together to love, to sing, care, to feel compassion, and to celebrate individuals with disabilities as the bravest among us!