I’m the aunt of my beautiful niece, Isabella, who was diagnosed with Vanishing White Matter (VWM) Disease at age four in 2009. Isabella’s joyful spirit and incredible courage inspire me to be the best I can be. She faces the challenges of this devastating condition with a smile that never fades, and she brings happiness to everyone around her. Isabella’s journey began when she was two, and her parents noticed she was stumbling more often than other kids her age. Her pediatrician thought she’d eventually outgrow it, but as time went on, she struggled with activities like skipping and jumping. After several referrals, we first heard the word ‘leukodystrophy.’ At four, her VWM diagnosis was confirmed by Dr. van der Knaap in the Netherlands.
She now wears orthotics, uses a wheelchair, and attends physical and occupational therapy. Despite these challenges, Isabella recently graduated high school and celebrated her 19th birthday. With tremendous hope she is now enrolled in a fosigotifator clinical trial.
Since her diagnosis, ULF has been an incredible source of information and connection for our family. We’ve attended ULF’s Family Conference every year since 2010. Learning about new research and treatments has been invaluable as we navigate Isabella’s condition. Knowing that there is a community of support through ULF helps us stay hopeful and connected with other families facing similar challenges.