HCU Community
Stories shared by individuals and families living with Homocystinuria.
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Masen C. Child
Mila Child
Mila, born in October 2018 in Canada, entered a challenging journey with Homocystinuria (HCU) just a week after her birth. Her parents received a phone call revealing her diagnosis of "Classical Homocystinuria," prompting a week-long stay at British Columbia Children’s Hospital.
A dedicated medical team worked to stabilize Mila's elevated levels, creating a treatment plan involving B6, Folic Acid, Betaine, formula, and regular blood work. Despite concerns about her diet, potential developmental issues, and the social aspects of growing up with dietary restrictions, Mila adapted well to treatment, displaying resilience and spirit.
Her parents emphasize the importance of support and community in navigating the challenges posed by HCU, and their goal is to ensure Mila's condition doesn’t define her, allowing her vibrant personality to shine through in various aspects of life.
(Published in 2023) Shared with permission from full story here.
Sam M. Adult
Sam's journey with Homocystinuria (HCU) began with an unconventional diagnosis at the age of 2, as breastfeeding likely delayed symptoms until the introduction of solid foods.
Despite early challenges, including seizures and muscle tone loss, Sam defied predictions and not only survived but learned to walk and talk. Speech therapy addressed some communication difficulties, and protein limitations helped curb stuttering.
Sam surpassed expectations, graduating from high school and pursuing Early Childhood Education. Now a full-time preschool teacher, she passionately imparts knowledge to young minds. Embracing her genetic condition, she encourages others facing HCU, emphasizing resilience, self-belief, and the transformative power of this unique journey.
(Published in 2023) Shared with permission from full story here.