Spinal Muscular Atrophy

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1 6mo

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Feeling MY Way Through this Journey #CrohnsDisease #DiabetesType2 #MentalHealth #Allergies #ChildLoss #SpinalMuscularAtrophy #ADHD

I've been going through multiple situations over the past 30 days. #1 My eldest daughter got arrested at a public facility, #2 the year anniversary of my middle daughter's death quickly approaches, #3 Mother's Day is when my mother transitioned, #4 fighting for my life with these UNPROFESSIONAL MEDICAL CARE TEAMS, #5 I have 3 grandboys from my deceased daughter that are in foster care and they refuse family communications. There's so much more, but this is THE TOP 5 STRESSES.

THIS EMOTIONAL ROLLERCOASTER HAVE MANY OBSTACLES!!!
#Fighting4MyLife

29 reactions • 8 comments

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MightyTogether 8mo

I'm new here!

Hi, my name is Supercrip. I'm here because I have come to a dead end trying to access help with my malformation of the spinal cord C6-T3. I have spastic diplegia and muscle wastage in legs and arms, particularly hands. I have Horner’s syndrome and autonomic dysreflexia. Spinal cord units in NSW, Australia will only accept people with spinal injuries caused from trauma not congenital.

#MightyTogether #SpinalMuscularAtrophy

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ALL MY LIFE MEDICAL TEST SUBJECT

Burnt-out from the ignorance that comes from the mouths of so called trained medical professionals whom attended society's schools to acquire a stamp of approval that they specialize in whatever 🙄 and obtained A DEGREE.

#Allergies #SpinalMuscularAtrophy #Anxiety #GastroesophagealRefluxDisease #SpinalStenosis #ChronicFatigueSyndrome #BrainInjury #MentalHealth #CardiovascularDisease #RheumatoidArthritis #Osteoporosis #Peripheral #InflammatoryBowelDiseaseIBD #InflammatoryArthritis #CrohnsDisease

39 reactions • 9 comments

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The Mighty's Spinal Muscular Atrophy (SMA) Condition Guide

The Mighty's Spinal Muscular Atrophy (SMA) Condition Guide

The Mighty Staff

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Spinal Muscular Atrophy

1y

The Mighty's Spinal Muscular Atrophy (SMA) Condition Guide

Spinal Muscular Atrophy (SMA) at a Glance: Spinal muscular atrophy (SMA) is a rare neuromuscular condition that causes degeneration of spinal motor neurons, or the signals from the brain to muscles, resulting in muscle weakness. SMA is usually diagnosed in the first few years of life when children are unable to achieve motor milestones as [...]

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Journey Through Life With a Rare Disease: Two Unique Perspectives

January 24, 2023

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Jacob sitting in his chair with his Mom posing next to him in front of a Christmas tree

Jacob sitting in his chair with his Mom posing next to him in front of a Christmas tree

Lori Butierries

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Spinal Muscular Atrophy

1y

When Our Family Found the Holiday Spirit During a Hospital Visit

My son, Jacob, had a pre-op appointment in late November in preparation for his December lumbar puncture (LP) procedure to receive SPINRAZA (i.e., a medication that slows down the degenerative progression of his primary condition, spinal muscular atrophy) and back tattoo to notate the injection site for future lumbar punctures. Before seeing the physician, he [...]

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Contributor's son, smiling and wearing sunglasses while laying on cushion on swing

Contributor's son, smiling and wearing sunglasses while laying on cushion on swing

Brittney Mosher

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Spinal Muscular Atrophy

1y

The Hardest Part of Parenting a Child With a Rare Disorder

“I know it’s hard.” I’ve heard that before and again recently the other day in regards to my son. Or my life or life with my son, I guess. I feel like I’ve been far too busy gaslighting myself into being strong that I sometimes forget that day by day, I’m living in an unimaginably [...]

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Holding Jacob in my lap

Holding Jacob in my lap

Lori Butierries

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Spinal Muscular Atrophy

2y

What I Didn't Know Before My Son With Spinal Muscular Atrophy Had Spinal Surgery

I didn’t know that I wouldn’t be able to pick you up again. I didn’t know that your body wouldn’t bend. I didn’t know that my upper arm strength was so weak. I didn’t know that spinal surgery would change everything, not just the shape of your frame. I didn’t know it would be the [...]

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Mother pushing son in wheelchair as daughter walks beside them.

Mother pushing son in wheelchair as daughter walks beside them.

Lori Butierries

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Spinal Muscular Atrophy

2y

To the Family and Friends Who Offer Support as I Parent Kids With Disabilities

Dear Friend, Thank you. Thank you for accepting me as the hurting and flawed human that I am. Thank you for not making me feel like a social pariah or treating me like I’m cursed because I have disabled children. Thank you for offering help without making me have to beg you for it. Thank you [...]

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Angela and her husband

Angela and her husband

Angela Wrigglesworth

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Spinal Muscular Atrophy

Finding New Hope: Living, Learning and Teaching with SMA

Teaching highly-energetic elementary school students is not the easiest job; but to me, it’s the best job. The kids I teach are curious, intelligent and helpful, so when I explain that I have spinal muscular atrophy (SMA) at the beginning of each new school year, it creates an amazing bond between the students and me. [...]