Livie's Story- Smooth Muscle Dysfunction Syndrome

At the 2022 An Evening From the Heart NYC event, we heard the story of the Petrera-Cohen family and their warrior princess, Livie. Donate here:
johnritterfoun...

[@wowtv101]

Thank you for sharing your beautiful daughter with all of us !!! Thank You for all you're doing to help us find a cure and help for all the other children, it's greatly appreciated

[@amyknutson8118]

I am so sorry for your loss, was/is very beautiful and perfect. You and your husband are very strong people and help get the ball rolling to help the research. If I am the money, I would donate to John Ritter Foundation, his foundation would be right with St. judes, MDA and Miracle Network. They founders are very loving caring genuine people and truly want to help others.

[@gracietilert8952]

Your courage is so inspiring and humbling. I am terribly sorry for your loss of that sweet beautiful baby. She is indeed a blessing to others that are following in her footsteps.

[@madamenecey]

I’m really sorry for your loss Nancy and Justin… I used to work with you guys years ago and Liv was a very special baby. I would think about her all the time… I’m really sorry and my prayers are forever with y’all.

[@j3d354]

💔 God bless baby Olivia

[@joannklinner2284]

I’m so sorry for your loss my prayers are with you and your family

[@toukiasmr3125]

I’m so sorry for your loss. My prayers are with you and your family.

[@autumninvirginia1229]

There are so many things that can happen between conception and birth. It is truly a miracle to have a healthy child. I cannot fathom the pain. I am truly sorry for your loss but am grateful for the way you fought for her.

[@scottjohnson6173]

That is just so tragic to hear that just hitting two and gone. I’m so sorry they have memory be a blessing.

[@19irving]

God bless your family.

[@Love-dw6ry]

Thank you for sharing your story. I'm so sorry for your loss. Much love to you and your family.

[@mermaidmama7880]

Olivia is beautiful and she WILL NOT be forgotten! Have courage ❤️

[@lauraquigley6403]

So sorry 😢!🙏🙏🙏Blessigs

[@rubymckinley4909]

Awwww, so sad...she's your little angel. You been touched by an angel.

[@agiarda16]

Rest in peace..prayer

[@veronicawilliams8207]

My prayers are with you ,and family

[@Amanda---]

You can SEE the pain in the father's eyes. 💔💔

[@Msmorningsunrise]

such beautiful wonderful child, sorry she is gone :(

[@dawnwalker5803]

I am a pediatric nurse. I can't say that I understand your pain, that's a personal " journey ". But, what I can say, in all good faith, is that, a loss is a loss. I lost my brother when he was 41. The longer a loved one is with you, the longer you linger for all those 41 years.

[@Nan-59]

I’m so sorry about your sweet baby girl. I can’t imagine that pain. I don’t even know about this issue … I knew when John Ritter died It was some of something very sudden, but I certainly couldn’t tell you what it was until I just came across this video. I hope the word gets out more about this because everybody knows Michael J. Fox has Parkinson’s, but I don’t know how many people know that John Ritter had this issue.

[@madhonib]

That is the problem with lesser-known diseases. When my son was diagnosed with DMD, they had nothing just to try to keep him from growing. Now they have some therapies for it but not many. The Doctor told me this kinda made me mad, that unfortunately, diseases like these are not the sexy illnesses, like cancer, everybody understands how bad it is, That makes it easy to raise funds & get the Doctors that want to do the research. So funding is slower & research doesn't work at the same pace, but just like with this illness, The heart is a muscle & when you have an illness that can cause muscles to break down. Their hearts are fragile, I am so sorry for the family's loss, she was a bright little light. peace

[@harrycrux7757]

Why am I here, I would have given up my life to let this little one survive.?

[@trudichoate1950]

🙏🙏💗

[@wanya_telborn]

Wow a lot of families do not have that money

[@pettytoni1955]

Money or not, these parents lost their daughter and are doing everything they can to be sure no one else suffers this type of loss.

[@iknitbecuzmurderisfrownedupon]

Oh, I thought the intubation killed her