MORONI A Utah toddler is one of the first in the U.S. to receive a potentially groundbreaking therapy, and his father is doing everything he can to give his son the strength to win his fight.<\/p>\n
Deep in the farm country of central Utah, a family is counting their blessings.<\/p>\n
Yes, I would call it living the dream, yes maam, said Alex Wight, who lives with his family in Moroni.<\/p>\n
Four years ago, while riding in the high country, Wight and his horse went off a cliff. The fall shattered Wights foot. Far from help, I was definitely going into some shock and I thought, Man, Im never going to get out of here,' Wight said.<\/p>\n
Wight climbed back on that horse and rode for 20 miles. If I would have quit, I would have never made it out, he said.<\/p>\n
Never was that toughness more vital than when his wife gave birth to their son, Cinch. I was pretty torn up. I cried a lot. Not gonna lie, Wight said.<\/p>\n
Newborn screenings showed Cinch has spinal muscular atrophy, or SMA.<\/p>\n
I cried. I was working at the sawmill, didnt even tell anyone I was leaving, (I) just put my machine away and left, Wight said.<\/p>\n
The neuromuscular disorder paralyzes a baby in the first few weeks or months of life.<\/p>\n
My first thought was that my son will never be able to ride broncs, rope, or just be a cowboy in general, Wight said.<\/p>\n
Many babies with SMA dont survive to their second birthday, but the day after Cinch was born, the U.S. Food & Drug Administration approved a new therapy. We felt like our prayers were answered, Wight said.<\/p>\n
In a single infusion, a virus delivers a new copy of the gene into the babys nerves, said Dr. Russell Butterfield, a pediatric neurologist with University of Utah Health and Intermountain Primary Childrens Hospital.<\/p>\n
Only this time, its not delivering a diseased gene that just causes more virus to be made, but a gene that we care about, Butterfield said.<\/p>\n
Its a $2.1 million treatment.<\/p>\n
I was thinking, Man, theres no way Ill ever pay for it, Wight said.<\/p>\n
Wight was determined. We just stayed on top of it. I wasnt going be the one to not get it, he said.<\/p>\n
With help from insurance and Primary Childrens Hospital, Cinch got the gene replacement therapy through the Primary Childrens Center for Personalized Medicine.<\/p>\n
The Wights wouldnt know for months if it worked. Amber Wight, Cinchs mother, said, Every days a waiting game, we have no idea.<\/p>\n
Alex wrote a book to teach children they can do hard things, even when theyre hurt or discouraged.<\/p>\n
Early one morning, a cowboy stepped out of his camp and into the corral, Wight said, reading the book to his son.<\/p>\n
He held his breath the day Cinch took his first steps. He just cruises, Wight said.<\/p>\n
It just brings a tear to your eye, to be honest, Butterfield said.<\/p>\n
Time will tell if the gene replacement therapy is indeed a breakthrough. I just hope he never quits, Wight said.<\/p>\n
With love wider than a prairie I guess on a scale of one to 10, Id call it a 12, Wight said and with the wonders of medical science, Cinch has a shot at a bright future, full of promise.<\/p>\n
You can get Alex Wights book at Amazon.com.<\/p>\n
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