It has been just over 4 months since the bomb of Cami’s diagnosis was dropped in our lives. Since, we’ve been sharing with close family and friends and connecting to some incredible and inspiring AS and special needs groups. Seriously, the power of social media has never been more incredible!
After much reflection, acceptance, discussion, and tears (lots of tears), I’ve decided it’s time to #advocatelikeamother and launch The CAMI Project. The purpose of The CAMI Project is share our journey with Angelman Syndrome to Connect, Advocate, Make a Difference, and Inspire.
This isn’t just for AS or special needs families, but for anyone who wants to join us in creating a kinder world and brighter future for the special needs kids in our lives.
I hope that by sharing our journey, those who follow along will feel more comfortable in understanding not only what Cami has, but who she is. I hope this will help build a caring network of support for her, other kids with special needs, and the families that are facing and overcoming these life changing diagnoses.
I hope to raise awareness of Angelman Syndrome and help find a cure. A cure for AS could have an incredible impact on related disorders such as Rett Syndrome, ALS, Alzheimer's, Fragile X, autism, and epilepsy. The research in Angelman Syndrome is unbelievably hopeful. In fact, AS has been cured multiple ways in mice! I'll share more as I learn about it, but until then you can learn more at the cureangelman.org.
I hope to use this unique opportunity to do good – to connect with, support, and empower others with the many lessons I’m learning through this experience.
Finally, despite her many challenges, Cami greets me every morning with a smile. I hope to inspire others with the joy, optimism, love, happiness, and strength that she reminds me to be grateful for every day.
I invite you to join our journey by subscribing for updates and following along on Facebook and Instagram. I look forward to hearing your stories, answering your questions, celebrating the inchstones, and doing our part to make the world a kinder place!
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