Show Compassion with a Click for PACS1 (a #1000Speak story)

When bloggers work together, they can achieve amazing things, I am in firm belief of that, and I will NOT be shaken from it. 1000 of us banded together in less than three weeks to start the ‘1000 Voices for Compassion’ idea. But compassion is ACTIVE, and here’s a simple way to live a little of it – let me tell you Kerri’s tale…

Kerri had a baby girl, and then a few years later, another one. But something was unusual about her second daughter, Bridget, and no-one seemed to know what. Recognising that her daughter had some level of special needs, Kerri and the healthcare teams supporting the family did their best to figure out what was going on, and how best to enable Bridget to develop to the best of her (numerous and considerable) abilities.

But none of the labels fit. Nothing in the textbooks seemed to suggest, in their entirety, what it might be that was going on with Bridget, and as she grew older, the lists of ‘things which were different’ grew, yet still didn’t add up to anything conclusive.

Kerri battled through tiredness, discouragement, and the need to somehow still make life work to try to learn WHAT was different about her daughter, and what this would mean  – compromised ability to learn? health problems later in life? shortened lifespan? How could she rest until she knew what Bridget’s life might look like, and so be best prepared to support her darling girl?

Rest she did not, but write and write and share and connect and keep going and keep striving, she DID, until FINALLY SHE GOT THAT DIAGNOSIS!

Bridget is no longer ‘Undiagnosed but okay‘, but diagnosed with a PACS1 genetic mutation, with a mostly complete prognosis for the rest of her life, an understanding of where the goal-posts are, and how things might pan out. And she’s still okay.

For Kerri, though, it took money, Herculean effort, huge amounts of time and energy, a will of tempered steel and levels of grit and tenacity that only a mother without an answer could hope to tap into. In short, she’s done an amazing thing. And here’s why it was so hard – there are only TWENTY children diagnosed with this IN THE WORLD.

That Kerri succeeded against those odds, to get a diagnosis for Bridget, is nothing short of legendary.

And for you to support them both, and to spread the word about PACS1 and let doctors know that it’s something which needs looking at, all you need to do is click. Twice.

Join the Facebook event which has been set up to lend clout to the promotion of PACS1 as a condition more hospitals need to be aware of. You don’t have to DO anything. Just join. Add your name to the list of people who don’t want to see mothers like Kerri pitted against such seemingly insurmountable odds. February 7th is the chosen day to be joined up and supporting, and you should do it.

Do it because this act of compassion is simple and easy and straightforward.

Do it to honour Kerri and to celebrate Bridget.

Do it because it matters.

Together we’re stronger.

Join 1000 Voices Speak for Compassion on Facebook, and write about compassion to be shared in a flood of GOODNESS on February 20th

Share and promote posts about compassion using the #1000Speak hashtag

Learn more about PACS1 here

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