February 7th is PACS1 Day. It’s true, the Governor declared it in Massachusetts. Also the PACS1 parents have declared it world wide. We are a small group of dedicated parents. I am not always sure if I ever give enough credit to the parents of our group. A group that has grown from 13 (when I joined) to over 130 families in the world. And some of the PACS1 parents are not (gasp) on Facebook.
There is Kim and Frederique. The first moms of PACS1 that created our family support group.
There is Roy and Natalia in the UK who created the WackyRaces a fundraiser for PACS1 children in the UK. Their goal is to find resources to provide longterm care and housing for children (soon to be adults) with PACS1. If you should be in the UK and/or Europe and want the auto ride of a lifetime while supporting their efforts you can learn more on their WackyRaces website.
There is Frederique who is teaching her son how to take a taxi in the Netherlands who is researching and trying to find funding to create a group home for adults with rare syndromes.
There is Taruna and Farhad who founded the PACS1 Research Foundation that has already found that the PACS1 gene mutation is not something that just happens in utero but continues to cause damage in our children’s organs. With their efforts we are learning on what therapies to focus on, what is PACS1 and what is Bridgetitis.
There is PACS1 Smiles a non-profit founded by myself and Beth P that is focused on advocacy, parent support and awareness so when a child is diagnosed with PACS1 they do not hear: we don’t know what it means. Instead they hear: contact this group, you have found your village.
There Beth B who each year creates a PACS1 video of our children.
There is Erin who each year creates a collage of our children. Where we look and mistake our children for their PACS1 twin because they all look so similar. Looking at the collage each year we see how our child has grown, but also how our group has grown.
There are countless unnamed parents who have answered by call, my text my post with understanding, never judgement and always with love. We might not have the answer but we have the camaraderie.
Before Bridget was diagnosed, I felt so alone. Not to insult my friends and family, we have had so much support. Yet not knowing why Bridget suffered was so overwhelming, we felt alone and frustrated. Now we have this huge world-wide village of support where it does not matter the time of day, there is someone online that is there to listen. The perk of being world-wide. With Google Translate we do not even have to speak the same language, because we speak the same parent.
The older children provide hope, the younger children provide amusement and the parents. Well the parents are just epic.
In 2017 I put out a post to PACS1 Parents, Beth B and I are going to VA with our families to meet. Who wants to join us? Fourteen families joined us, including Eric and his family who were diagnosed just a few weeks prior. In 2019, Erin blew my PACS1 weekend away creating a true bigger than Texas event that lasted four days with over 20 families arriving. From as far away as the Netherlands and Australia. This year we will be gathering in NYC for another get together. The families in Spain have created their own network. The families in the UK get together annually.
None of us are alone anymore.
That is the happiest part of PACS1 Day? It isn’t that Bridget has a diagnosis.
It’s that she has a larger than life family from every continent on Earth.
How cool is that?
Happy PACS1 Day everyone!
If you would like to donate to PACS1 Smiles, Inc. your tax-deductible donation will be used to create awareness so others can find their village. You can donate at:
PO Box 38
Sandwich, MA 02563