I remember Kerri and Bridget from my early days of blogging. Kerri is an amazing mom who never, ever gave up on finding a diagnosis for her beautiful daughter. I am sharing her post here today and asking for anyone who reads it to share it, click the links, become part of a someone’s miracle. Kerri’s family got their answer and found their support. Who knows how many more people out there will benefit from this information. Shout it out loud. Over and over. Change some lives.
Today is the very first PACS1 awareness day. A day created by the parents of just 20 children, with the help of fellow bloggers. PACS1 is a rare genetic syndrome. So rare that there are only 20 children in the world that have been diagnosed.
There could be more children. So much more. Sadly there are countless parents out there with children who have unknown syndromes. Unless physicians are aware of the PACS1 malformation they will not know to test for it. Unless parents know that PACS1 exist they will not be able to ask their physician to test for it.
What I am so very thankful for, today, is finding the PACS1 parent community. Together we have discovered that common therapies help our children succeed. We have discussed what has worked, what hasn’t and how our various countries create special education advances. While small, we are making a difference. Not just…
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