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Aggressive Respitory treatment/prevention/therapy helped greatly to keep my daughter off ventilator!
the help of all family members
We started Robinol when she was 5 months old and that made all the difference in the world!
Found a great website www.nemaline.org
I now except it almost
Creatine and L-Tyrosine have helped with muscle development.
Regularly seeing doctors
Cough assist
I gave 100% to help my daughter live! Quitting work too.
to have a dog for best friend
At 3 she started talking really well. Now at 5 most people can understand her!
Found and joined the support group
my daughter and sisters understand each other
Having ankle braces keeps my walking stable and greatly reduces back and hip pain.
Cough assist machine
A great team of Doctors at Children's Hospital helped us manage.
my mum figths for me like a lion
She has a true joy for life that is amazing to be a part of!
Contacted others
had a lot of therapie that helpt some
Keeping track of what time I start to lose energy makes activities much easier.