Monday, July 24, 2017

Inspirational Video Share: Meet Dandy, Healed Either Way!

Spinraza Thoughts So Far...
I know I said I was going to share some information about the new treatment, first ever treatment that is for persons living with SMA (Spinal Muscular Atrophy), like me! It is not available in Canada yet, but it is in the USA. My reservations about celebrating this treatment still stand because I have yet to confirm that the process is ethical. My heart goes out to the little ones who seem to be benefitting from Spinraza. Yet, I remain reserved. Not sure why, I just really need to know and understand more. 
Cured In A Body With ALS 
On that note, I want to share an inspiring video about a man named Dandy who lives with Amyotrophic Lateral Sclerosis (ALS). ALS is a cousin of SMA but to date as far as I know of, this disease attacks people in adulthood and tears down the entire body's muscles within 2-5 years. The coolest thing of all, inspite of the rapid progression of the ALS, Dandy considers himself already healed. Yes, his muscles do not work, he needs assistance breathing and eating with a G-tube, and assistance with all aspects of daily living. His speech is affected as well and as ALS rages on, unless a cure or miracle happen, he will lose all speech and eventually his physical life on earth. But he knows where his real hope comes from. Take a watch and see why Dandy considers himself healed, when the world would disagree. I want to add that I concur with this inspiring man's viewpoint.

Wednesday, July 19, 2017

The Most Expensive Medical Treatment Ever! The First Ever Treatment For Spinal Muscular Atrophy!

Today, I learned about a new first ever, actual treatment for people with Spinal Muscular Atrophy called Spinraza. Having no clue about this incredible news, I never dreamed I would live to see the day that there would be any helpful treatments. Never been concerned about being cured or helped my self, but
Me, Anita 1967.
definitely prayed for help for friends and all the young ones battling SMA. There are three types, Type 1, 2, and 3 as well as adult onset. I, Anita, have type three and am now fifty-one. My arms can no longer leave my side, but I am blessed with still being able to  use my right hand well, swallow food and beverages, as well as breathe on my own. My life is a gift from God enhanced by a wonderful husband, friends and family - not to mention lovely Personal Care Attendants who are my "arms and legs," to assist me with all aspects of daily living.

As I research this new treatment, trying to answer a question a researcher asked me on the phone today: Would I be interested in trying the treatment if offered? I "met some inspiring folks of all ages on YouTube, fellow SMA'ers I like to say. I want to you guys to meet them too....

As soon as I know more, I will be posting more about this new treatment that was approved in the USA by the FDA in December 2016 and maybe soon in Canada (my homeland.) 

Now meet just a few of the many wonderful people whom I am honoured to call fellow SMA'ers, my peers.

Meet My Fellow SMA'ers
Meet Maija

Meet DeAnn

Meet Evie

More Wee Ones
Meet Michael

Thursday, July 13, 2017

Watch Now! My Hero Joni Eareckson Tada - Live on Facebook!

Check out one of my biggest heroes, Joni Eareckson Tada LIVE at 11am EST. She is celebrating fifty years of using a wheelchair! They are re-releasing her great bio pic called JONI! She plays herself and it is one of my most favourite movies ever! It is special because she plays herself at the time of her diving accident in 1967.
Meet Joni- click here to the Facebook page. 
And click here to go to Joni and Friends.