Craig, it really breaks my heart to read this. My condolences to you and your family.
Every time I read things like this it provides further proof of how lucky my family has been to have little ones that are, for all intents and purposes, perfect.
I can't imagine the pain you're feeling with the loss of Gwennie. I can tell from the pictures that she probably brought a smile to your face every time you were with her or see her picture, the same way my grandkids bring one to mine.
Again, I'm truly sorry for your loss. RIP Gwennie.

No words. They would be inadequate. Stay strong. Love is real.


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I can't think of any word to lessen your loss except to say that you and your family shall be in my prayers.

Dave

I am heartbroken to read about Gwennie. I hope you and your family come together and celebrate her short but wonderful life.

My sympathies to you and your family.

You have the grief of losing your precious granddaughter and also feel the pain of what your son (and your wife) is going through as well as others affected. That's a a lot to carry.

Thinking of you and yours.

Craig, my humble condolences for your family’s loss. I can’t even imagine.

OH craigster.,....my heart is with you. remember the good times,. Pompe is a terrible terminal disease regardless of infection....

So sorry for your loss, Craig.

Craig, so sorry for your loss. You have my deepest condolences.

Craig,

We are so very sorry to hear of your incredible loss.

How terribly sad. May your family find peace. RIP Little Gwennie.

Craig

Heartbreaking. Condolences to you and your family.

Craig, I’m so sorry for your loss. I pray for the comfort of you and your family in this very difficult time.

I can't look at those photos without tearing up for your loss. Such a beautiful child.
My sincere condolences to you and your family.

OMG...just heartbreaking. So terribly sorry for your loss. Hang in there.

Damn, Craig. This is horrible. :(

Really nothing I can even say brother.

My deepest condolences to you and your family.

Vinny

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I don't know you Craig, but I'm heartbroken for you and your family.

Be well.

Thank you to all my fellow Pelicans for the condolences. I haven't shared this on any social media but you all are a different bunch. I don't know of any other group that has such insight and problem solving information as the guys and gals on PPOT.

I was pondering posting about Pompe Disease when Gwennie was first diagnosed. It is a rare genetic disease and didn't know if anyone had been through anything similar. I know there are fellow Pelicans who have dealt with childhood illnesses and unfortunately the loss of a child. Also, just dealing with grief and sorrow in general, it's never easy and sometimes it's just best to lay it all out in the open.

Seeing Gwennie enjoy her 3 short years as a happy child and not having to witness the slow eventual decline gives us some solace. She was just getting ready to start her enzyme replacement therapy which is the starting point toward organ and mobility failure. But seeing my Son in so much pain is what really hurts me and my Wife the most. The others, DIL and Granddaughters seem to be taking it a bit better.

But the main reason I posted in the other forum was to give some insight into how faith and family really helped get us through this terrible time.

We have already setup Grief Counseling and my Son has already been in contact with other parents who have lost young ones, not necessarily to disease, some to drowning and auto accidents. But he finds it difficult at times, some question religion or just have a lot of anger at whatever incident or accident caused them to lose their loved one. The other problem is finding a competent counselor or therapist as most are not taking on new patients due to an overload of people who are still dealing with depression and anxiety stemming from the Covid lockdowns.

But as a family we will be strong for each other and persevere, it's what we do. Hold those you love close and again thank you all for your thoughts and prayers. It may sound cliche' but they do mean so much.

Craig - prayers to you and your family on the loss of Gwennie!

So sorry for your family's loss, Craig......what a beautiful little girl. Love you, man.....