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DiGeorge Syndrome: How to Advocate Effectively in Medical Appointments
Navigating the medical world with a child diagnosed with DiGeorge syndrome (22q11.2 deletion syndrome) can feel overwhelming. Multiple specialists, complex terminology, and evolving treatment plans make clear communication essential. As a parent or caregiver, you are your child’s most powerful advocate. Here’s how to confidently speak up, ask the right questions, and ensure your child’s…
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Williams Syndrome: Parenting with Joy and Sensory Awareness
Williams Syndrome is a rare genetic condition caused by the deletion of genetic material from chromosome 7. Children with Williams Syndrome often have a distinctive profile: exceptional verbal and social strengths, deep emotional sensitivity, and a love of music, alongside challenges like heart conditions, mild to moderate intellectual disability, motor delays, and sensory sensitivities. For…
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22q11.2 Deletion Syndrome: Sibling Support and Medical Advocacy Tips
DiGeorge Syndrome, also known as 22q11.2 Deletion Syndrome, is a genetic condition caused by a small missing piece of chromosome 22. While it affects each child differently, many children with 22q face a mix of challenges including congenital heart defects, immune system issues, developmental delays, feeding difficulties, and behavioral or learning differences. Families caring for…
