Top Tweets for #XlinkedPVNH
Here we go! February is rare disease month. On Feb. 28, I will lead our PVNH, GMH and SBH inclusive community in showing their colours in support of all rare disease affected individuals & their families. #rarediseaseday #pvnh #gmh #sbh #xlinkedPVNH #brain #corticalmalformations
"A great soul serves everyone all the time. A great soul never dies. It brings us together again and again." - Maya Angelou.
March 27th 2009 at 8:07am, I lost my baby girl. Today is all about remembering the love of my life: #Ella.
#XlinkedPVNH #FilaminAdeficiency
12 years... Yet, it feels like yesterday. ๐ท Jane Eaton Hamilton for Now I Lay Me Down To Sleep.
#PVNH
#XLinkedPVNH
#FLNAmutation
#FLNAdeficiency
#FLNAlungdisease
#Diaryofabereavedmom
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.๐#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
So grateful for #PVNHadvocates, such as Jonathan, who allow me to share extraordinary stories. Today is his 1-month #heartiversary following a #hearttransplant needed due to #XLinkedPVNH complications. ๐ #PVNH #PVNHawareness #FLNAmutation #transplant #organdonation #givelife
This week, we celebrate a huge milestone, along one of our own. We celebrate Jonathanโs 1-month heartiversary. You see, exactly a month ago today, on December 29th, Jonathan was granted the gift of life by a generousโฆ https://t.co/PrhFgFEkZt
#MarchonPVNH #Day23 = #Perseverance. Because it's my only way of keeping your #memory #alive. Because you #fought with every once of you. Because of you others know to #nevergiveup. Because I am so #proud of of you. Because #iloveyou. #PVNHawareness #XLinkedPVNH #OurPVNHlife
#MarchOnPVNH #Day21 = #Yellow. The other #half of #PVNHDay. The #cultural link to #Ella's #Trinidadian #heritage and the #colour of her #christeninggown. #PVNHawareness #XLinkedPVNH #FLNAmutation #OurPVNHlife #Myheart
#Day1 of #PVNHmonth Photo Challenge = #diagnosis. It took 6 months after Ella's death for a diagnosis to be confirmed. We are one of the lucky ones with answers. #MarchOnPVNH #PVNHawareness #PVNHsupport #XLinkedPVNH #FLNAmutation #FilaminA
We're uniting our voices today to raise awareness of PH and associated diseases like #XlinkedPVNH and #FLNAmutation. https://t.co/sYgLpT3jw8
It's #WorldPHday! PH is often associated with #XlinkedPVNH caused by #FLNAmutation. Knowing about it can help save lives. #FLNAlungdisorder https://t.co/qLRnY2HQQI
It's #WorldPHday! PH is often associated with #XlinkedPVNH caused by #FLNAmutation. Knowing about it can help save lives. #FLNAlungdisorder https://t.co/qLRnY2HQQI
HAPPY #WORLDPHDAY! We're celebrating by launching our brand new #SometimesItsPH campaign targeting medical... https://t.co/ktpKTPbAdo
So #grateful for the team @TexasChildrens!! #XLinkedPVNH due to #FLNAmutation took @PVNHsupport's heart and soul: Ella & sadly, other kids. https://t.co/SIRymjwCSV
Lung Transplantation for FLNA-Associated Progressive Lung Disease https://t.co/SjuFKs5fpl
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