What a week! I never imagined my message would reach so many thousands of people. And at this point I feel like I really need to say our message instead of my message. So many of you were standing up and speaking out from the very beginning I honestly feel like we are all in this together. Things have been crazy, and I just need to take a moment to say thank you to each and every one of you.
There are so many of you that have been here from the beginning. We thank you so much for your support. Without hesitation you started fighting for Jameson’s rights. There are also so many of you that I have met this past week that have reached out, shared your stories and offered continued support. And there are people that we have newly reached, that had never heard of Pfeiffer syndrome until now, giving us support. The outpouring of love and support has been absolutely unbelievable and meant so much.
What I have experienced this past week is not something I was expecting.
They say timing is everything. This statement could not be more true at this moment.
Dating back as far as I can find, that meme was posted in the beginning of February of 2015. Nearly a year ago. If I would have seen that meme a year ago there is no way I would be able to put the time and energy I have had to use into this fight. I have spent the last year in an intense program getting my Respiratory Therapy degree. I literally spent every free moment studying and I just finished all my testing in the end of December of 2015. Just weeks later in January (2016) this meme came to my attention.
At first, I wasn’t 100% sure of what to do. But, the combination of having the free time with your support and motivation to fight, made me confident in what I was doing. This has been a lot of work, and taken a lot of my time and attention, but it has been 100% worth it. From very early on I have always wanted to do more for the cranio community. I have wanted to do my part to fight for Jameson and kids like him. I feel like the timing could not be more right.
I have some big ideas and big plans in the works to get awareness and education out there about Pfeiffer syndrome and craniofacial differences, and I owe a big thanks to all of you. The amount of support you have given me has motivated me so much to do more than I ever have. The message of choosing kind, and treating every single person with dignity and respect is one that you have empowered me to champion.
So, thank you. Thank you for supporting us. Thank you for following us. Most importantly, thank you for sharing our story.
To all the media outlets that reported this story, thank you. Thank you for reaching out, and thank you for introducing the world to Jameson and Pfeiffer syndrome.
“one love, one heart…” – Bob Marley
ABC News, ATTN, Australian Women’s Weekly, Chip Franklin KGO Radio, Daily News, FOX News, Good Morning America, HLN TV, Hot Moms Club, Huffington Post, Huisgenoot, Independent Journal Review, Independent, ITV News, Kidspot, LittleThings, Mamamia, MensXP, Metro, News4 San Antonio, NY Daily News, Parent Herald, Parents, Rainbow in the Storm, She Knows, The Blaze, The Mighty, The Motherish, Times of India, TODAY Parents, Ubergizmo, and YOU.