Meet Shane and Hannah! I have a special place in my heart of course for my fellow peers who were born with SMA (Spinal Muscular Atrophy, just like me!). Shane has a great sense of humour (a little dry for some, if you aren't use to it) and attitude about life, living with SMA Type 2.
Shane, like myself, faced a shorter than most others, lifespan. That was until recently. Shane and many others have been blessed with a very new synthetic DNA treatment called Spinraza. Shane has to have an injection into his neck, directly to the spinal cord every four months! It is the first ever actual treatment for this life threatening disease. Type 1 is the number one genetic killer of infants, such as my beloved nephew at eleven days. It was created to replace the affected or missing genes to halt the atrophying effects of SMA. It is not a cure. However, because it now can be started as soon as a little one is born, they are living without the symptoms, as if the SMA was not there!
It is wonderful for those with type one and two. Shane has been using a wheelchair since he was two. He is now about twenty-sixish. The Spinraza has a mega high cost and must be taken for the rest of their life to maintain the effects. It costs hundreds of thousands for each treatment. It is covered by many people's health insurance in the USA. As for where I live in Canada...last I heard was the phone call survey I received from the Muscular Dystrophy Association, when I first learned about this amazing breakthrough. Canada was trying to decide if it would be approved for treatment here or not. Not sure what happened. Mostly because I am not interested in receiving it anyway. I personally has blessed with a long life, I am about to be 53! And I can't travel to receive the injections. I leave when I move on, up to God.
Shane has noticed that he is actually gaining some abilities he lost a decade ago. He also has to accept that his life expectancy is now the same as the average healthy adult! It may sound odd, but I understand how challenging it can be to accept when you have been prepared your whole life to leave earth early. I was misdiagnosed at about seven, when the "Specialist" told my Mom in front of me that I would be dead at twenty. (Duchenne's Muscular Dystrophy). Then re-diagnosed at thirteen with Spinal Muscular Atrophy. However, I didn't learn my life could be "normal" until I passed twenty one or two. I have doubled that age and still battle with preparing for physical death. It is a blessing but it would seem that once you are programmed to believe death will strike prematurely, it's challenging to accept and embrace life here, without pre-planning my life ending event. I am happy for Shane and think he will be just fine adjusting to the very amazing fact that he will no longer have to face a death sentence. And he has a very beautiful, funny, good natured girlfriend and caregiver,Hannah, to enjoy his new adventure called life! He was doing a great job before meeting Hannah too. She's a bonus enhancing his life!
I have been blessed and encouraged watching these two do life together. They laugh a lot and that is why so many fans watch, I am sure! So I hope you enjoy this couple's sense of humour as well as learn a lot about living with SMA and what interabled relationships can be like. You'll see why I said that when you watch their vlogs and tv interviews...Watch the video below to see. Thanks you two for helping to open the eyes of those who need to learn we are equal to everyone else. And thanks for encouraging you fellow peers to live life to the fullest, that love is for everyone. We just happen to do life in a unique way! And thanks for keeping it real!
Shane, like myself, faced a shorter than most others, lifespan. That was until recently. Shane and many others have been blessed with a very new synthetic DNA treatment called Spinraza. Shane has to have an injection into his neck, directly to the spinal cord every four months! It is the first ever actual treatment for this life threatening disease. Type 1 is the number one genetic killer of infants, such as my beloved nephew at eleven days. It was created to replace the affected or missing genes to halt the atrophying effects of SMA. It is not a cure. However, because it now can be started as soon as a little one is born, they are living without the symptoms, as if the SMA was not there!
It is wonderful for those with type one and two. Shane has been using a wheelchair since he was two. He is now about twenty-sixish. The Spinraza has a mega high cost and must be taken for the rest of their life to maintain the effects. It costs hundreds of thousands for each treatment. It is covered by many people's health insurance in the USA. As for where I live in Canada...last I heard was the phone call survey I received from the Muscular Dystrophy Association, when I first learned about this amazing breakthrough. Canada was trying to decide if it would be approved for treatment here or not. Not sure what happened. Mostly because I am not interested in receiving it anyway. I personally has blessed with a long life, I am about to be 53! And I can't travel to receive the injections. I leave when I move on, up to God.
Shane has noticed that he is actually gaining some abilities he lost a decade ago. He also has to accept that his life expectancy is now the same as the average healthy adult! It may sound odd, but I understand how challenging it can be to accept when you have been prepared your whole life to leave earth early. I was misdiagnosed at about seven, when the "Specialist" told my Mom in front of me that I would be dead at twenty. (Duchenne's Muscular Dystrophy). Then re-diagnosed at thirteen with Spinal Muscular Atrophy. However, I didn't learn my life could be "normal" until I passed twenty one or two. I have doubled that age and still battle with preparing for physical death. It is a blessing but it would seem that once you are programmed to believe death will strike prematurely, it's challenging to accept and embrace life here, without pre-planning my life ending event. I am happy for Shane and think he will be just fine adjusting to the very amazing fact that he will no longer have to face a death sentence. And he has a very beautiful, funny, good natured girlfriend and caregiver,Hannah, to enjoy his new adventure called life! He was doing a great job before meeting Hannah too. She's a bonus enhancing his life!
I have been blessed and encouraged watching these two do life together. They laugh a lot and that is why so many fans watch, I am sure! So I hope you enjoy this couple's sense of humour as well as learn a lot about living with SMA and what interabled relationships can be like. You'll see why I said that when you watch their vlogs and tv interviews...Watch the video below to see. Thanks you two for helping to open the eyes of those who need to learn we are equal to everyone else. And thanks for encouraging you fellow peers to live life to the fullest, that love is for everyone. We just happen to do life in a unique way! And thanks for keeping it real!
Travel Adventures!
Intimacy And Disability
Spinraza - Shane's Still Alive
Shane Lifts Cup For First Time In A Decade!
The Today Show- Behind The Scenes
Shane When He Was Younger
