Families can prepare for what is a long day at the hospital by: bringing snacks and/or meals and feeding supplies, communication devices, orthotics and anything needed to get child comfortably through the day. Our goal is to help your child leave the day with a plan of care that streamlines and optimizes their medical and therapy cares. We recognize that this will be a long day, but we hope to bring together an expert team for your child’s rare condition, and efficiently offer you the best advice to improve your child’s quality of life. We anticipate most patients being seen once a year in multi-disciplinary clinic.