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…

PACS1 Share 1000Speak

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 meanΒ  – 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.

1000SpeakJoin 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

Advertisements

64 thoughts on “Show Compassion with a Click for PACS1 (a #1000Speak story)

  1. I am so glad that they were able to find help. This is exactly what my blog is about. My son went through many misdiagnoses also before we found out what the problem was. There must be a change. This is not right for the children or their families! I am going to reblog this on m site.

    Liked by 1 person

      • By the time he was diagnosed his problems had become too severe. It was a difficult battle until he passed when he was thirty years old. Still too young, but too old when everyday is more pain. I am happy for you and your daughter.

        Liked by 1 person

        • Aw shit, I’m sorry to hear that. 😦

          This endeavour is for my friend, Kerri, and her daughter, Bridget, whose diagnosis of PACS1 is the one which was being sought, and now they want to spread awareness, particularly to the medical community. I’m just trying to help.

          Liked by 1 person

          • You really are helping! You are really sweet to start this campaign for her. The reason that I am doing what I am doing is to draw attention to how children are treated when they are chronically ill. So I thank you for supporting your friend.☺️

            Liked by 1 person

            • She started it – I’m just taking part. Lots of bloggers are. I’m glad you’re doing your bit. Have you heard of 1000 Voices Speak for Compassion? It’s on Facebook and across the Blogosphere we’re having a mass-posting on Feb 20th, all about compassion, in an effort to make a difference and bring some good. Find out more at 1000speak.wordpress.com – I think it might be a good platform for you to share more about your cause, and raise some awareness and link up with others who are equally determined advocates.

              Liked by 1 person

  2. A truly beautiful share, Lizzi. Thank you for educating your readers about this and for championing those touched by this disease and the many others, which receive less attention than those in the mainstream.

    You are all heart.

    Liked by 1 person

  3. Kerri’s journey to finding a diagnosis for Bridget has been remarkable. I have enjoyed reading her posts and am happy she finally has an answer. Bridget is so darling! She has such a bright, shining face in every picture Kerri posts of her.

    Liked by 1 person

    • Bridget is ADORABLE! Did you see Kerri’s post with the video of her dancing in the sand? It’s so, so precious. That little girl is GORGEOUS and I’m so glad that she’s part of my Blogosphere, even once removed πŸ™‚

      Like

  4. Pingback: Weekend Coffee Share: My Feb. 20 Topic Edition | Just Gene'O

  5. Pingback: Ten Things of Thankful #86 | Considerings

  6. Hi Lizzi, this is an important share. My heart goes out to Kerri as I can only imagine the tenacity required to get her daughter diagnosed properly. I’m happy that at least they can take action and understand Bridget’s needs better.

    I nominated you for the Very inspiring Blogger Award. Hope you don’t mind. Stop over to see what it’s about. Thanks for inspiring me, Lizzi! http://www.lisathomsonlive.com/whats-inspiring-you/

    Liked by 1 person

    • Me? Oh! Wow! Thank you. That’s very kind of you πŸ™‚ I’ll certainly come over and see! I’m always glad (and surprised, somehow) to inspire.

      And yes – this is such an important share – Kerri has been through hell several thousand different ways, I think, and that she’s managed to get the diagnosis she needed is AWESOME, but serves to remind that there are so many out there still going through hell, in desperate search of it. I want us all to help them find it.

      Like

  7. Great of you to post about this. Not only am I glad to have 1000 Voices Speak For Compassion this month, but on February 28 it is Rare Disease Day. I am writing about compassion all month long because Rare Disease Day is an important day for me and many others also. It’s hard knowing you are nearly alone in dealing with something in life and to me both days are all about compassion and we need to do what we can.

    Liked by 1 person

  8. Pingback: Show Compassion with a Click for PACS1 (a #1000...

  9. I love this, that you are sharing this story. I feel VERY strongly about orphan diseases and the lack of research and funding they receive. I understand the fact that Pharma companies have to put their research dollars where the money and the most need is, but it’s completely not right and unjust that just because a disease is rare that the people who suffer are left to fend for themselves. I’m working on a fundraiser for a friend who’s daughter has a rare and fatal disease. Most kids don’t live past the early teen years. There is no treatment and no cure. Nothing. And the families affected are having to spend the precious few years they have with their children raising money for a clinical trial. To me, this is where government needs to step up. In our country we have drastically cut the budget for research and development for these diseases… Sorry to rant but I have a hard time with the fact that lives are at stake and money is the deciding factor.

    I read, I joined both PACS1 pages on FB. I also read the link that Gene’O shared. It’s disturbing that so little showed up in his google search! (Also, aren’t you so glad I introduced you two?)

    Liked by 1 person

    • SO SO GLAD! Gene’o is a LEGEND! And yeah, it’s shocking how little there is Out There about PACS1. It sucks and it needs to change. Thanks for being on board with trying to make it change.

      Your fundraiser sounds awesome. Have you written about it? Are you going to? That’s such an awful thing for your friend to face. I hope you make the money she needs.

      Governments are corrupt and self-serving. I really don’t like a lot of the things they do or allow.

      Like

  10. Lizzi, I had big trouble with the links, but followed undiagnosedbutok on WordPress and Twitter and this Facebook thing. https://www.facebook.com/PACS1Syndrome

    I also did a fairly good search for info, and got nothing from Nature, the American Medical Association, Lancet, or the World Health Organization.

    How long have these people been trying to get heard? I am curious now, because the hard science community seem to be aware of this gene and (kind of) understand how it works, but no one is connecting it to the need for medicine to get involved, or at least not connecting it on the Internet so the rest of us can understand it. Is what the search engines are telling me.

    Liked by 2 people

        • Just an update here. I jumped on the academic databases today and did massive searches of media and peer-reviewed journals. All I could find is genetic analyses that I can’t really understand (I just don’t speak that language), but nothing related to this specifically. And not a thing about diagnosis, treatment, anything. Thought you might like to know that.

          Like

            • I do, I do. I can think of at least one person who does advocacy about other pediatric medical issues that will surely be interested in this because they’ve dealt with the same lack of knowledge and lack of awareness, though not to this extent and they are much further along and better situated to deal than they were fifteen years ago. I think they will at least give this a look, if they haven’t already. (I only know them on Twitter, and just hooked up last weekend, so they could be commenting on this thread already for all I know).

              Liked by 1 person

                • Emailed the link to them with some questions and my take on the advocacy situation. Tried to contact them on Twitter first, but they are not around. I do not know their routine, but at the very least they will answer private communication from me.

                  Liked by 1 person

                    • Three more things, then my work here is done (for now).

                      1. It is easy for me to be passionate about this because of things about my upbringing I have never shared.

                      2. I am in the information-gathering phase right now, and given the lack thereof, that could be a problem. Might take awhile. Like weeks or longer. But if once I am satisfied that I have the info I need and find enough people who are interested enough to listen to me, I will use the megaphone. Oh yes I will. Feeding me info and connecting me with interested people will obviously accelerate that process, but really, it takes as long as it takes.

                      3. Things like this are one of the reasons I am working so hard to build a big network. If you have a large Facebook group or a respectable Twitter following or a well-trafficked blog, it is so important to use to use those things to get attention for people who need it and connect them with supporters. Otherwise, what’s the point of the whole thing?

                      Good this was a #1000Speak post. Good, good, good.

                      Liked by 2 people

                    • Ohmigosh I am SO RIGHT WITH YOU on #3 – if we don’t use these things to make a difference for good, then why bother?! It’s not like internet fame is any use, but supporting (and encouraging others to support) a worthy cause is SO worthwhile. I’m only too pleased to do it.

                      If there’s anything more I can do once your research is ready, LET ME KNOW! πŸ˜€

                      Liked by 2 people

  11. I love you for sharing this!!! Such a beautiful beautiful post about such a beautiful mama and her BEAUTIFUL GIRL!!! YES YES YES. I am behind you all the way in this. I adore Kerri and Bridgett… and pray for them both often, those tow precious people.

    Such an inspiration… you. Kerri. And that girl with the astounding light—> Bridgett!!!!

    Liked by 1 person

Comments are where the magic happens...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s