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This space was created for parents, caregivers, and guardians walking the complex and deeply personal journey of supporting a child with Arthrogryposis. Rooted in lived experience, it exists to remind you that you are not alone, that your well-being matters, and that support is not a luxury, it is essential.
Here you will find community, understanding, and resources designed to help you navigate caregiving, connect with others who truly understand, and feel seen, supported, and valued every step of the way.
Dear Parents and Caregivers,
If you are reading this, chances are you are carrying more than most people can see.
I want you to know, before anything else, that you are not alone.
My name is Ani Samargian, and I am the Founder of Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI). But just as importantly, I am a mother of a child with arthrogryposis. Like many of you, my journey began with a diagnosis that changed everything, bringing fear, uncertainty, advocacy, love, exhaustion, and a fierce determination I didn’t know I had.
I understand the long days filled with appointments, therapies, paperwork, and advocacy.
I understand the emotional weight of making decisions when there are no clear answers.
I understand the quiet moments,, late at night, when the world is still, and the worry is loud.
I also understand the deep love, pride, and joy that comes from watching our children defy expectations, grow into themselves, and show us what resilience truly looks like.
AMCSI was created from this lived experience from the understanding that families affected by AMC need more than information. They need community, compassion, and connection. And caregivers, parents, grandparents, guardians, need support too.
Too often, caregivers are expected to be strong without pause, to carry everything without complaint, and to pour endlessly from a cup that is rarely refilled. This resource space exists to say clearly and intentionally:
You matter. Your well-being matters. Your story matters. Below you will find resources designed to support you tools to help prevent burnout, opportunities to connect with other caregivers, and ways to reach out for one-on-one or group support when you need it most.
If you ever feel overwhelmed, unseen, or unsure, please know that reaching out is not a sign of weakness, it is a sign of courage. Whether through our support groups, one-on-one peer connections, conferences, or future caregiver gatherings, AMCSI is here to walk alongside you.
We also want to honor your voice.
If you feel called to share your story whether it’s about early diagnosis, years into caregiving, moments of burnout, triumphs, grief, hope, or growth—we would be honored to listen. Your story may help another parent feel less alone, another caregiver feel seen, or another family find the courage to keep going.
There is no pressure. No timeline. No expectation of perfection. Just an open door and a listening heart.
You are doing an extraordinary job in circumstances most people will never fully understand. Please be gentle with yourself. Please ask for support when you need it. And please remember that AMCSI exists because of families like yours—and for families like yours.
With understanding and compassion,
Ani Samargian
Founder | Community Support Advocate
Arthrogryposis Multiplex Congenita Support, Inc. (AMCSI) 💙
Resources for Parents & Caregivers of Children with Arthrogryposis (AMC)
Caring for a child with arthrogryposis is a journey filled with fierce love, advocacy, strength, and resilience, but it can also be exhausting, isolating, and overwhelming.
At AMCSI, we believe that supporting caregivers is essential to supporting children. This page was created to offer validation, connection, and practical tools to help parents and caregivers care for themselves while caring for their children.
You are not meant to carry this alone.
Caregiver burnout is physical, emotional, and mental exhaustion caused by prolonged stress and responsibility.
It is not a failure, it is a natural response to carrying a heavy load for a long time.
Common signs of caregiver burnout include:
If any of this resonates with you, please know: you are not alone, and help is available.
You are allowed to:
Caring for yourself is not selfish, it is sustainable caregiving.
If you’ve been doing this for years:
Long-term caregiving requires support, rest, and renewal, not just endurance.
If you are new to an AMC diagnosis, everything may feel overwhelming.
Please know:
Focus on today, not the whole journey.
AMCSI is here to help you find community, information, and hope, step by step.
One of the most powerful tools against burnout is being understood.
Join Our AMC Facebook Support Groups
AMCSI hosts and moderates several private, supportive Facebook groups for parents, caregivers, and individuals with AMC.
These spaces allow you to:
👉 Explore and join our AMC Facebook Support Groups
You are welcome whether you are newly diagnosed, years into this journey, or anywhere in between.
Sometimes you don’t need a group, you just need one person who understands.
If you are feeling overwhelmed, isolated, or simply need someone to talk to who has walked this journey, we are here.
📧 Email us at: info@amcsupport.org
We would be honored to help connect you with:
• Another parent
• A caregiver
• A mom or dad with lived AMC experience
This is peer-to-peer support rooted in compassion and shared understanding.
You don’t need a large village, sometimes one safe, understanding person is enough.
Rest doesn’t have to mean time away or a vacation.
Small moments of rest matter.
You are managing medical appointments, therapies, school accommodations, advocacy, and emotional labor, often all at once.
Some days, “good enough” is more than enough.
Suppressing emotions increases burnout.
You are allowed to love your child deeply and acknowledge how hard this journey can be.
Ask yourself:
Write down:
Keep this list ready for hard days.
If you are experiencing emotional distress or feel at risk of burnout, additional support may help:
If you are outside the U.S., please reach out to local mental health or health services in your country.
AMCSI supports the whole family through programs including:
Need support right now? You don’t have to wait or figure this out alone.
Your well-being matters. to your child, to your family, and to us.