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RIP Riley (2 Viewers)

I'm so sorry for your family's loss.  Any words I could offer would be hollow words from a stranger, but I really do care and wish you all the strength you need to get through this. You were very brave to share with us, and we all share in your loss. 

 
JFC, what a horrible tragedy. I can't even imagine what you are going through but I hope your family bond is strong enough to get through it. I'm so sorry to hear.

 
Oh, shady, so sorry to hear the news of your loss.  I find a small measure of comfort knowing that Justin could say his goodbye, yet I understand how devastating this is for all of you.  My prayers continue to be with you and your family.

 
Just think about how heroic she was Shady. She was so strong, had such a will, and had such a desire to go home and be there with her family and her brother even for a small amount of time. And she went through hell to get there. That's a hero to me man. She couldn't walk or talk or even roll over but she was more heroic than most of us will ever be. 

I'm so so sorry. 

 
So sad. Condolences. I'm certain she'll stay alive in the memories of yourself, your family and many of us here. Make sure you find a way, when the mourning is done, to keep strength, peace and hope alive for yourself and your family. Even though it may not feel like it right now, there is a future for you all, honor Riley by making it the best you can.

 
Not the title change I was hoping for.  Feel like I got punched in the gut.  RIP Riley - you've clearly left your mark on all of us. 

 
I've been dreading seeing the title change these last few days. As everyone else has said, there's no words to express the sorrow to hear of the news. I'm glad that you and family were able to say goodbye but know that in her far too short time here, she's made an impact on so many people who knew her through you.  I am certainly glad to have known her even though I never met her. 

You and yours will be in my thoughts. I'm so sorry.

 
I am so sorry.  Words cannot express my ache for you and your family.  Stay strong and know that people are there if you need it.

 
I am so sorry Shady.  You and your family have my condolences.  Riley will be remembered by a lot of people.  She touched all of our hearts.  I will never forget her and how much you and your family did to get her well.

 
OMG.  :shock:  Reading that title was like a kick to the stomach.

Throughout this thread I've not been very good at putting my feelings into words, but always managed to get something down. I can't even begin to try and piece together an adequate reply right now. Unbelievable.

As anonymous internet people, our abilities to help you are somewhat limited - there's probably not much that would help right now anyway. But when the grieving is over and you return, we'll be waiting for you. We're here for you more than ever.

#TeamRiley4ever

 
My heart hurts.  I'm so very sorry for your loss, Shady.  RIP Riley; her strength was incredible and truly inspirational to us all.  May she have eternal rest and be forever loved.  

 
shadyridr said:
Our cardiologist said there were five documented cases of IP with PH. I reached out to my IP support group on Facebook and told them this. The IP protocols mention nothing about PH being a possible effect nor testing for it. The president of the foundation, and an IP mom as well, who I have become very good friends with, reached out to the IP scientific biobank in Italy and one of the scientists there said that yes, PH with IP is common. So now the president is working on updating the IP protocols. All due to Riley.
Click to expand...
Thinking about this.  She will probably save the lives of others based on this change.  I know it's small comfort to you at this time, but it may be big to future children.

 
This is terribly sad news, Shady.
I will continue to pray for your family during this difficult time of grieving. And like many others here, I will mourn the loss of your baby daughter. You are an awesome father. Riley and Justin are very fortunate to have you as their dad.

 
Speechless and heartbroken.  Shady, my best to you and your family as you navigate this sad time for you all.  

 
Shady, I'm so very sorry for your loss. Peace and love to you and your family and your baby Riley. 

 
Normally if I'm away for a bit and find myself Pages behind I'll skip to the last page... In this case reading all responses makes me realize just how GREAT a community we have here. :thumbup:

As one post said Shady WE are all here for you. Take care 

 
Very sorry to hear, shady.

I don't know anybody here IRL, but I feel like we all got to know Riley as she touched us with her courageous fight.

Condolences to you and your family.

 
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