Chicago, if you missed the amazing show by @michiganderband with @cececoakley at @ThaliaHallChi last night, don’t sleep on them next time! 🔥🤘🏻
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Julie Lyons Graham
335 posts
Such an important and underfunded birth defect chronically, #CHD. Incredibly grateful for advocacy through @TheCHF the last decades; however, it is not enough for those who die early like my brother. #Siblings #SingleVentricle #HeartTransplant #CHDAngels
The Children's Heart Foundation@TheCHF
Today - the first day of #CHDAwarenessWeek - we honor all the #HeartWarriors & #HeartAngels who have gone before us and who inspire every minute of the important work we do. ❤️ Please pause for a moment and listen to their stories: youtu.be/2GNgukEJ0JI #HeartMonth #CHDStories
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@mmsteltz @LurieHeartCtr @allen_kiona @CardiacNeuro @ACTION4HF @ConqueringCHDIL Thank you for sharing these amazing kiddos and their talents! ❤️
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Children hospitalized in the #CCU at @LurieHeartCtr with #Covid19 restrictions is stressful but also time to play, move, & show off children's hidden talents to "The Boss," @allen_kiona.❤😷❤ @CardiacNeuro @ACTION4HF @ConqueringCHDIL vimeo.com/496903679/reco…
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@GBx2TrueLove My husband with a complex CHD was once told by his insurer that they wouldn’t cover his cardiologist because records from his last visit stated that he was doing ok. They didn’t understand that every ACHD patient needs continued care. We had to fight to continue his coverage.
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39 yrs ago 2day I was given a 50% possible survival rate 4 my open ❤️ surgery. Called the mustard. Truly feeling grateful 4 that day & all the ones I’ve had since then. Also feeling sad I have 2 fight my ins 4 proper ACHD care as an adult. #dTGA #CHD #ACHD #ENDPRIORAUTHSNOW
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@reanneheart7 Wishing you a wonderful day! Happy birthday 🎉
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Today is my birthday, I will and have been celebrating all weekend. Feeling extremely blessed to be here, surrounded by the most amazing family and friends. ( seriously they are here...)
#TakeNothingForGranted
#BirthdaysAreABlessing
#CHD
#HatsAreNotMyThing
❤️❤️❤️
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@mmsteltz @LurieChildrens @ACHA_Heart @NPCQIC I know I’m late to the party on this one (have largely been on a social media diet since Dec)... but this is amazing! Thank you for letting me contribute. I’m always willing to help the program, patients, & families in any way ❤️
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Hey #CHD #ACHD community- don’t miss the @LurieChildrens ACHD Patient & Family Education Day next Sat 7/27. The event is free & you don’t have to be a Lurie patient to attend luriechildrens.org/en/events/adul…
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@thalias_heart @NHSOrganDonor Thank you for posting this. There are families like mine out there who lost a loved one because they didn’t get organs in time. If more people were registered, more families could be spared from this loss💔
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Would you accept an #organ if you or a loved one needed one? If the answer is yes but you're not signed up to be an #organdonor please ask yourself why?🤷♀️ 2 minutes out of your #BankHolidayWeekend is all takes to #SignUp @NHSOrganDonor #PassItOn #OrganDonation #ShareYourWishes
Scarborough, England 🇬🇧 English
@chambanamom @MayoClinicHLHS @PCHA_CHD @NPCQIC @DonateLife Thank you! @chambanamom I know you feel this pain. Missing Stuart and thinking of him. Had two root beers today, one for both dearly missed young men.
Chicago, IL 🇺🇸 English
Remembering my brother on what would be his 51st birthday. Grateful for the opportunity to extend his life and reminded of the need to improve outcomes and keep families together with #SingleVentricle #CHD @MayoClinicHLHS @PCHA_CHD @NPCQIC @DonateLife
Chicago, IL 🇺🇸 English
@ZakkisMom It’s also a constant education that you have to serve to others... while my husband was alive, and now that he’s gone. I often get “was it unexpected?” How do you answer that with CHD? It’s really both yes and no. 💔
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There have been many many (too many) losses in the congenital heart defect family in the last few days. It's often like our CHD warriors are on the front lines of a war. Please be kind to #CHD families, the warriors, and the congenital heart medical teams who serve in this war.💔
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@nevrmore47 Speaking as one of those wives... being with my husband through his battles with ACHD is something I wouldn’t have traded for the world. It was worth it & I loved every day with him. Because of ACHD, ultimately there just weren’t enough of those days. 💔
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@ShelbyKuttyMD That’s so true, and reminds me of Ed Sheeran’s song, “Supermarket Flowers”. There is a line that says “A heart that's broke is a heart that's been loved”. ❤️
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Grief never ends.. it changes..it’s a passage, not a place to stay.Grief is not a sign of happiness, nor a lack of faith... it’s the piece of love..!!!
Dr Laura Yeates@LauraYeates1
We must never give up looking for the causes of why young people pass away suddenly - @CSHeartResearch @jodieingles27 @rdbagnall tinyurl.com/y35aq8sh
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@mmsteltz I wish so, too. They would have had so much fun drinking root beer together 🍻
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Stuart and your family are with us wherever we go, especially when #Fontan outcomes are involved. You teach us soooo much! Wish Stuart and Greg could have met on earth. ❤
Julie Lyons Graham@chambanamom
@mmsteltz @NPCQIC @LurieChildrens So great to see your smiles! This brightened my day 🥰
Chicago, IL 🇺🇸 English
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A parent, Zakk, quoted yesterday, "The 3 of you are the female version of the 3 musketeers." #SingleVentricle #Care #Passion #FON #All4your1 @NPCQIC @LurieChildrens
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Julie Lyons Graham retweetledi
There's still time to send a #Valentine to our kids spending the holiday in the hospital! Thanks @ChicagoParent for the shout out! #ValentinesDay #all4your1
Chicago Parent@ChicagoParent
.@LurieChildrens has a goal to send 15,000 Valentine's Day cards to children spending the holiday in the hospital, and you can help. bit.ly/2TIzhbS
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Julie Lyons Graham retweetledi
Families connecting families and filling a need. This is what makes #Americagreat. Donate today to keep more #Singleventricle families thriving and together @LurieChildrens someassemblyrequiredccu.org/new-page/
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Dear #CHD community: thank you for being a source of support & information. I was proud to navigate the CHD world with my husband & help to advocate for him with his medical care. Despite the challenges of living with a #singleventricle he lived life to its fullest for 43 years.
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