About @CHROMOSOMAL DISORDERS Village Community
Hello Parent Members!
You can find me in the MPC community app under the @CDMom ID.
Born and raised by a mother with cerebral palsy, I am now the proud mother of a neurotypical son and a medically complex daughter with a rare chromosome deletion. She is only the ninth case ever diagnosed in the world.
Every day is a balancing act between advocacy, research, caregiving, and sheer survival. I am not just a mom—I am a nurse, a therapist, a researcher, a driver, an interpreter, and a fighter, often all at once. I have learned to translate medical jargon, challenge professionals, and trust my instincts when no one else seems to have the answers.
This journey can be isolating. Friends fade, understanding is scarce, and the weight of responsibility can be immense. For that reason, I am so excited to join My Parent Cafe and help build up this incredible community.
Help the Village Grow
If you know a parent of a child with Chromosomal disorders, please send them the link to this page so that they can join. MyParent Cafe doesn't replace any of the existing communities that exist on traditional social media. We see this as a complimentary and ultimately safer and more helpful platform.
We're also looking for a few more Baristas for this community. Baristas are the moderators and community stewards. As we grow, I do hope to invite a mix of parents, medical providers, education and behavioral specialists and non-profit representatives to help ensure the community needs are met.
Finally. We are looking for PERK providers. Any product, service or non-profit dedicated to helping to meet the needs of the this parent community are invited to submit an interest form on our PERK page. We'll be sure to get back to you right away.
