🛡️ CASK Warriors Caregiver Guide

💙 From Terry: My Journey with Anthony and the CASK Warriors Mission 💙

Hi, I’m Terry — Anthony’s mom and founder of the CASK Warriors Foundation Inc.

When Anthony was first diagnosed with CASK Gene Disorder, I felt like the ground shifted beneath me. What I needed most wasn’t just answers — it was connection. Through years of learning, advocating, and loving fiercely, I’ve built this foundation to make sure no family walks this road alone. I’ve organized these sections based on what I wish someone had handed me on day one. I hope it brings you clarity, comfort, and confidence.

📘 SECTION 1: Understanding CASK

What is CASK Gene Disorder? CASK is a rare neurodevelopmental condition caused by mutations or deletions in the CASK gene — a gene that’s vital to brain development, synaptic communication, and myelin production. Children with CASK may show a wide range of symptoms, including:

• Microcephaly or macrocephaly

• Delayed motor and speech milestones

• Muscle stiffness or hypotonia

• Cerebellar hypoplasia or brainstem differences

• Seizures or epilepsy

• Visual or hearing challenges

• Feeding difficulties

• Developmental regression (in some cases)

I remember looking at Anthony and seeing both mystery and brilliance. His diagnosis didn’t change who he was — it simply gave us a better way to support him. Early diagnosis and intervention truly make a difference in quality of life.

🩺 SECTION 2: First Steps After Diagnosis

If you're here because your child was recently diagnosed, take a breath. You are not alone.

Here are the steps I took, and ones I’ve guided many families through:

• Build your care team: Find a pediatric neurologist, geneticist, and developmental pediatrician who truly listens.

• Get evaluations: Ask for a full medical and therapy workup — even if it feels early, it's helpful.

• Apply for services: Early Intervention (birth–3 years) programs are a lifeline.

• Start a medical binder: Track tests, therapies, growth charts, and milestones.

• Connect with community: Join CASK Warriors and find strength in shared stories.

💡 Terry’s Tip: I kept a daily journal of Anthony’s progress, setbacks, moods, and therapy reactions. It gave me insight and helped our team personalize his care.

💪 SECTION 3: Therapies That Make a Difference

Therapies aren’t just appointments on a calendar — they’re empowering tools that help your child engage with the world.

• Physical Therapy (PT): Builds mobility, core strength, and balance

• Occupational Therapy (OT): Supports fine motor skills and sensory integration

• Speech & Language Therapy: Helps with communication — whether verbal, AAC, or feeding strategies

• Vision & Hearing Interventions: Many children, including Anthony, benefit from focused care here

• Behavioral or Play Therapy: Nurtures emotional resilience and social engagement

The best therapy plan is one tailored to your child — not a template. Trust your instincts. You know your child better than anyone.

🍎 SECTION 4: Supporting Health and Nutrition

Feeding and nutrition can be challenging. Anthony struggled early on with feeding and digestion, and here’s what helped:

• Work with a pediatric nutritionist who understands neurodiverse needs

• Connect with a feeding therapist through OT or SLP

• Consult a GI specialist for reflux, constipation, or absorption issues

• Explore myelin-supportive nutrition — healthy fats, iron, omega-3s, and B12 made a noticeable impact

We’ve compiled a dedicated nutrition guide for families navigating CASK. Let me know if you'd like a copy — it’s full of caregiver-tested insights.

👨‍👩‍👧 SECTION 5: Caring for the Caregiver

Let’s talk about you. Yes — you. Being a parent to a child with CASK is one of the most profound roles in the world. But it’s also draining. Caregiver burnout is real, and you deserve support.

• Say yes to help. Whether it’s a meal, a ride, or a listening ear — let others in.

• Take micro-breaks. Even ten minutes alone with tea can reset your whole day.

• Seek therapy or support groups. Talking to someone neutral helped me process and stay strong.

• Connect with other parents. Only they truly “get it” — and the bond is extraordinary.

You are doing something extraordinary. Never forget that.

💻 SECTION 6: Resources & Support

Here are places where I’ve found both help and hope. You will too.

• 🛡️ CASK Warriors Foundation — our main hub of resources, stories, and connection

• 👥 Facebook: CASK Warriors Community Group — a private, supportive space for sharing and asking questions

• 🌍 Global CASK Foundations — families and groups from Germany, UK, Brazil, and beyond

• 🧬 Genetic and Rare Diseases Information Center (GARD)

• 🧩 Global Genes & NORD — great for general rare disease advocacy and support

If this page reached you when you needed it most — I’m grateful. You're now part of a warrior family bound by resilience, love, and truth.

With warmth and belief in your journey, Terry Founder & President, CASK Warriors Foundation Inc.