Top Tweets for #InMemoryofElla
Ella's birthday is at 5:47 I can't help but wonder what 🎶 you'd be into. Which 🐎⛳🤸🏊 you'd pick. How you'd draw & sing. If pink would be banished from your wardrobe & what you look like now, at 14...
Happy birthday my love! I miss you!
#Diaryofabereavedmom
#InMemoryOfElla
Next event for Ella is with CRY …. For all the football fans, Christian Eriksen talks sense - if you can’t attend please use the QR code to donate, we need £10k for a day of heart screening #CRYscreening #inmemoryofella #pleaseshare
News Article: Christian Eriksen urges fans to get checked at CRY Heart Screening - https://t.co/dv9mMl5onx @BrentfordFC #RememberingRobert #RaisingAwareness
First visit to my girl in weeks, now that the snow has melted a bit and I didn't have to worry about people around me not knowing how to drive in snow ;-) I needed this.
#InmemoryofElla
#Diaryofabereavedmom https://t.co/zsqJAEIJft
Celebrating #RareDiseaseDay, with a touch of yellow added to the green, pink, purple and blue flowers I picked up for the occassion. Love that I have a mask which mirrors those colours :-)
#InmemoryofElla
#XlinkedPVNH
#PVNH
#PVNHsupport
#FLNA
#FLNAmutation
#Iamrare #jesuisrare
PVNH Month, Day 25 = #THERAPY Ella was zonked out after play therapy with BCCH's childlife & maman. During her sessions, we played, taught her sign language, made music. She breathed, grew & lived tx to '02 therapy.💗#MarchOnPVNH #PVNH #PVNHawareness #XLinkedPVNH #InMemoryOfElla
#MarchOnPVNH Day 24 #HOLIDAYS Reminders of my unfathomable loss. Of how much I miss Ella. We had 3: Thanksgiving, Christmas & New Year. I'd discover yrs later how connected Ella & I are to Santa. #PVNH #XLinkedPVNH
#FilaminAmutation #ILD #DiaryOfABereavedMom #InMemoryOfElla
Drop of done at #BCCH. Though unable to prepare personalised gifts to ICU families, there were a few bags of presents delivered for young patients: small games, a princess chest, blankets, slippers, books, coloring materials and tonnes of playdoh. #inmemoryofElla #payitforward
This was only day 1 and my feet are 100% beat up already... Combined #ASHG19 with a meeting at #TexasChildrens with some of our lung transplant experts, then cardiology and genetics back at the conference. More tomorrow! #PVNHlife #PVNHawareness #InmemoryofElla
Day 1 of #2019ggsummit was amazing, and filled with inspiration and precious rare networking and connections. Here's to more today! #PVNHawareness #PVNH #FLNAmutation #InMemoryofElla #raredisease #globalgenes @ San… https://t.co/t9rp1CNNK4
Dernier vendredi de la collecte de fonds pour la recherche en PVNH au Regal Beagle. Il reste moins de 48 heures pour une #biere #blonde pour la #cause. Vivement le long week-end! #PVNHawareness #PVNHresearch #beerforacause #lager #weloveredtruckbeer #InMemoryofElla
Who says you can't have fun with #PVNHday planning? This a glimpse inside one of our founder's friend's house. Thank you Denis!! #pinkandyellow #pvnhloud #PVNHawareness #pvnh #InMemoryOfElla https://t.co/wJdZewiSQ4
So happy that #landmarks such as #NiagaraFalls join us for #awareness of #PVNHday! Thank you to the Niagara Falls Illumination Board for their support! #pvnhawareness #pvnhloud #pvnh #raredisease #InMemoryofElla… https://t.co/gVQQ6kNwYh
1 down, 17 more to go for #PVNHday!!
#pinkandyellow #pvnh #pvnhawareness #pvnhloud #ourpvnhlife #InMemoryofElla #vancouver #bc #raredisease #skyline #landmarks @ Vancouver, British Columbia https://t.co/d47roGf7N8
BC Place never disappoints! Let the week of PVNH Day celebrations begin!! #PVNday #pvnh #pvnhawareness #bcplaxe #raredisease #InMemoryOfElla @ Vancouver, British Columbia https://t.co/tEIeNoTCSd
#sunshine is the best #cure for the #heart & the #soul. #diaryofabereavedmom #inmemoryofElla #PVNH #PVNHawareness #FLNAmutation
Thank you is never enough. Every #dollar #raised goes to #PVNHresearch so #PVNHfamilies can get #better #diagnosis & #improved #care. Last day. Make it count!! Can't wait to see how much we raised #together! #RedTruckbeer #regalbeaglekits #beerforacause #inmemoryofElla #PVNHaware
Dernière journée pour la #recherche / last day for #PVNHresearch!! Join me for a #redtruckbeer at the #RegalBeagle in #Vancouver :-) #inmemoryofElla
For the 2nd year #mayorgregor has proclaimed #Aug7 #worldpvnhday !! Thank you @cityofvancouver for helping us be #PVNHloud! Now, time to get a new #frame :-) .
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#pinkandyellow #pvnh #PVNHawareness #pvnhday #pvnhday18 #heterotopia #sbh #neuronalmigrationdisorder #inmemoryofElla
Last night, my #heart swelled with #love, #pride, #hope and #gratitude. Love for #Ella who turned #10 on her #pinkcloud. Pride at the #legacy I built for her and #inmemoryofElla. Hope for… https://t.co/oQNS4rA0QF
Happy #PVNHday!! Tonight, @BCplace was lit #pinkandyellow in support of our #PVNHfamilies worldwide, in advance of #Aug7. Great #start to a #PVNHloud campaign to raise #PVNHawarenes. #inmemoryofElla
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