1.1K
A.Rare disease means my child becomes part of a larger community, showing us how beautiful rare is.
🦓🧬💜
#raredisease #mettl23gene #community #mightymila #rarediseaseawareness
@a.bridgett.farmer
#Curemito
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2.7K
CUWe can't do this without YOU! Push all those buttons, comment your favorite thing to do with your family, and share share share💚 help us, help Elsie!
Link in bio to learn more and support.
#genetherapy #fundraiser #leighssyndrome #curemito #familytime
@cure_mito_foundation
5.1K
JOrare disease day is feb 28th so a lil late but still worth sharing 🤍 #rarediseaseawareness #rarediseaseday #chromosome15q13 #specialneedsmom #specialneeds
@jodottjo
199
GESecond round of ivy therapy. The babies have been way more active and are eating so much more. I’m so grateful for this hospital my babies are doing amazing with no reactions to the iron #tripletsofinstagram #driscollchildrenshospital #anemicproblems #fypage
@geegee.1994
73.0K
LAToday we went to Columbia University Irving Medical Center to meet with a doctor who specializes in SJIA. Systemic Juvenile Idiopathic Arthritis (sJIA) is what Johns most recent diagnosis is. sJIA is a rare, severe autoinflammatory disease. That needs to be closely managed with medication and a Rheumatologist. There is no really cure. John is also at a extremely high risk of developing lung diease due to this sJIA. this appointment today was to confirm what we already knew but to get a second opinion from a doctor who is very specialized in the rare diagnosis. We also have an appointment at Bostons Children’s Hospital in May should we need an additional opinion. As you can see John is such a trooper through all of this. We are so lucky 💖 #momtok #raredisease #toddlersoftiktok #medicalparents
Comfy Outfit: @magneticme
Breakfast on the go: @davidprotein
Lunch: @thesmithrestaurant
@laurengodden__
26.7K
HOSamy looks like any happy little boy…
but he is fighting a rare genetic disease called LGMD2C.
This condition slowly takes away muscle strength from children.
Today he walks.
Tomorrow is uncertain.
Gene therapy trials are giving families hope, and we are fighting every day to give Samy a chance to grow, run, and live his life.
Please share.
Awareness can change the future.
❤️ Stand with Samy
❤️ Stand with rare disease families
❤️ Hope is coming
#LGMD2C #RareDisease #GeneTherapy #HopeForSamy #CureLGMD RareButStrong ClinicalTrials HelpSamy MuscularDystrophy Hope
@hopeforsamy
4.8K
ALEEG set up is a very unpleasant, stressful and anxiety provoking experience for a child (and, in fact, for parents too). But look how well Alice is doing as she is holding her Ms Rachel at Songs for Littles doll and is watching a personal message kindly recorded by Ms Rachel for Alice! 🙏🙏🙏💖
#EEG #eegsetup #msrachelsongforlittes
#rarediseasewarrior
#seizures disabilityparenting
@alices_world_of_wonder
6.5K
JEThis past weekend Jer got some buddy time in with Tristen. My best friend Shanta brought him to play and it helps Jeremiah with his social emotional development. They were fun to watch and quite entertaining #thrivingwithtk2d #mitochondrialdisease #rarediseaseawareness #socialemotionaldevelopment #bigpersonality
@jeremiahgracentk2dwarrior
52.6K
CHRosie is facing what no little 2-year-old girl should have to face. While her peers are scootering and running and doing acrobatics all over the neighborhood, she is trying to hang on to the few weeks of supported walking she has left.
Before her diagnosis and well before she lost the ability to walk, we saw a woman in a wheelchair one day. Rosie asked what it was. We explained to her that she had a special chair to help her because her legs didn’t work very well.
“Like me?” Was her reply.
Hearing her little cartoon-like toddler voice say those words was heartbreaking. Rosie felt the stress and pain from her disease long before we ever understood that something was very wrong.
Metachromatic Leukodystrophy will take every milestone she has achieved from her this year. We are switching her equipment often to adapt to her changing needs. So far it has kept her upbeat and given her things to look forward to as her body stops working.
Please consider donating to her medical fund (GoFundMe is linked in the bio on her profile page) so that we can keep her comfortable and included. This week’s change will be a tree swing near the sidewalk that allows her to play and feel a part of the neighborhood gang while all the kids scooter and bike down the street.
#mldawareness #newbornscreening #metachromaticleukodystrophy #raredisease
@cheering4rosie
574
HOHospital visits, tests, worries…
yet his smile never fades.
He doesn’t know he’s fighting a rare disease,
he just knows how to smile.
And that smile gives us the strength to keep going. 💙
#LGMD #RareDisease #GeneTherapy #HopeForSamy #NeverGiveUp RareStrong CureLGMD FightForKids MedicalJourney Hope
@hopeforsamy
150
LEI wish I could go back in time to the moment before my daughter got her diagnosis and tell myself…
This is going to be terrifying.
It’s going to change your life, and it’s going to change her life.
Nothing will ever feel the same again.
But it’s not going to be the end.
You are going to survive it.
I remember thinking there was no way I was strong enough to be a medical mama.
I thought I was going to fail her.
I thought the appointments, the hospital stays, the regressions, the unknown… would be too much for me.
But I didn’t fail.
And I won’t.
Because I have her.
And she makes me try harder than I ever thought I could.
She makes me stronger than I ever wanted to have to be.
She makes me become whatever she needs, even on the days I feel like I can’t do it.
This life is hard.
It’s scary.
It’s exhausting.
But it’s not the end of our story.
We’re still here.
And we’re still fighting.
#AGS #raredisease #medicalparentlife #gtube #rarediseasemom
@lemmy.strong
8.1K
MOThank you for helping me help him. Surgery is booked for next month, we can do this!❤️ Every donation helps make this possible! If you cannot donate sharing helps so much. #raredisease #geneticdisorder #surgery #entsurgery #chronicinfections
@momlife.withmara
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