PREFACE TO MEDICAL INFORMATION
How a parent or parents decides to care for their child or
children with any life threatening disease is a very personal decision.
Difficult decisions must be made in regards to SMA. No one should be criticized or condemned for the decisions
that each family makes. I am only
telling you of my personal experiences and personal knowledge of SMA.
In reading this you may or may not agree with my philosophy but this is
MY personal opinion and the way we choose to care for our daughter.
My intent of writing this is to share what I have learned and to pass on what I believe is lifesaving information.
the years my friends have worked with researchers and various SMA doctors to
help find the cure. These doctors
agree that the children are doing especially well and they promise to do studies
but this is not happening fast enough. The
studies that are being conducted at this time are hopeful and have the potential
to be promising but we feel we do not have the time to wait. We have taken it
upon ourselves to try to find the CURE. As you know, time is of the essence and each day is precious
time we do not have the luxury to waste. I
am not saying what I do for my child is THE Answer to SMA. All I know is what is
working for my child and those who have ventured into this area before her and
with her who are also doing very well. My
knowledge is of course mostly type 1 based. Most of the knowledge I have acquired has been from friends
who have type 2 as well as type 1 children.
saddens me more then words can express to see so many children who have passed
away from this horrible disease. I know the children who have died are no longer
suffering and in a far better place. My hope and daily prayer is that the cure
.sooner rather then later. In
the meantime, I will share my knowledge and keep on praying.
The great thing about this webpage I have created for my daughter is that
I can share and no one can edit what I have to say.
If you are offended or do not like my philosophy then you can just click
on out of this webpage and go on your merry way.
Thank you for taking the time to get a glimpse in the life of my
beautiful princess HANNAH.
In no way can I assume responsibility for medical or legal aspects of what I am writing. Either you and/or your health care professional who treats and examines you must take the responsibility for uses made from this website.
OUTLINE OF MEDICAL INFORMATION