Os meus pais estão sempre comigo
Salbutamol helps with strengths and fatique
Get plenty of rest
Drink fresh goat milk, it makes different!
Staying on my belly helps me to breathe easier.
Getting a mickey button helped me have more energy
Spinalna misicna tip1
My Computer
Salbutamol has helped to maintain strength
The support of my family and friends.
NIV / use of bipap
Being proactive with care is essential for best outcomes! Get the gtube/bipap/cough assist as early as it seems it's needed!
Received excellent medical care as mom was a RN
I had an extraordinary mother and wonderful siblings
Registered charity in memory of our daughter The Annabelle Rose Foundation
Alina's mother Olga Germanenko joins the map. Alina is SMA1 and 7 years, has tracheoscomy and ventilation support
Was told I'd be in a wheelchair by the time I was 12. I'm still walking!
My parents always letting me believe I can do anything
Faith- God is great
Vivonex diet
Technology & equipment
Paleo diet, initially gluten restrictive eating helped with losing/maintaining weight and having more energy/better endurance throughout the day
Accepting yourself is very important
a electric wheelchair to compensate the muscels of legs, and a breathing machine to compensate the breathing musculaur
At age ten, my spine was fused with Harrington rods to prevent further scoliosis.
I am married with a 2 year old toddler which keeps me active
Meditation makes me calmer and less stressed.
Chloe has been on Sodium Valporate (Epilum) since 18 months old. This has restored many functions and provided some strength.
I use cannabis for pain by eating it.
Музыка всегда и везде делает мое настроение лучше
Medical Marijuana
My daughter has a sma type1, start of the disease in 5.5 months. She is 17 months. I can help.
Treatment of Stem cells changed of my life
Мама Артёма Татьяна. Очень люблю красивую природу и животных
Ukrainian Registry of SMA patients http://csma.org.ua:8080/
Connected with other palliative / comfort care families
Community Community COMMUNITY!! Get connected and involved with other families and individuals with the same condition!
I do feel better because of my family and my friends!