Tanner and Skyler Jensen were both born with Spinal Muscular Atrophy (SMA). Their story started on April 20, 2011, when cute little Tanner was born to Esther and Justin Jensen of Layton UT. When he failed to meet milestones like pulling to a stand or learning to walk his family became very concerned. On December 13th, 2012 sweet Tanner was diagnosed with Spinal Muscular Atrophy (SMA) type 2.
Tanner Jensen in his new wheels.
At the time of his diagnosis, his mother, Esther was 7 weeks pregnant with Skyler and was told that Skyler would have a 1 in 4 chance of having SMA as well. Skyler was born July 29, 2013. Shortly after, he was tested for SMA and was found to also have this devastating disease.
Skyler is happy to be mobile.
Lota is 7 years old and is a good friend of Jordan; Tanner and Skyler's oldest brother. Lota is crazy about the outdoors and loves running with his Dad. He was recently crowned the 2014 XTERRA Trail Run Utah Regional Champion (Male 0-9 yrs old) and Lota wants to use his passion for running to help the Jensen boys.
Lota playing with Tanner & Skyler.
Lota's goal is to raise money to help the Jensen's with medical expenses and anything they need to help Skyler and Tanner enjoy life as normal as possible like many of the little boys in the neighborhood. Help Lota make a difference. Donate here or at any America First Credit Union under "Tanner & Skyler Jensen Fund". Inspire Lota to keep on running for others. Lota's two older sisters and Dad will run this race also to support him with his cause.
Thank you for helping the Jensen family. They truly appreciate it.
After the XTERRA National Trail half marathon. Lota and his sister braved the rain, mud, slippery trail and for Lota a toothache to finish 13.1 miles for his little friends And to bring awareness to SMA.
Below are more information about Spinal Muscular Atrophy (SMA)
Spinal Muscular Atrophy (SMA) is a rare degenerative disease that affects the motor neurons. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, lifting your arms, breathing, and "swallowing. Slowly SMA robs these children of all of these activities. The brain’s cognitive functions and the ability to feel objects and pain are not affected. As yet, there is no treatment or cure for SMA.
There are many medical expenses that come with an SMA diagnosis. These expenses include co-pays for numerous doctor and therapy visits, co-pays for medical equipment and out of pocket expenses for medical equipment not covered by insurance. Also it is becoming increasing clear that the Jensen's are going to have to purchase a more accessible home because of SMA. Tanner has never been able to walk and has been using a wheelchair since shortly after diagnosis. The Jensen's expect to get a wheelchair for Skyler after he turns one.
Their current split-entry home is not wheelchair friendly because of the many stairs they have to navigate. Tanner can not get to a sink in his wheelchair to wash his hands and even has a hard time getting into the narrow bathrooms. Two kids in wheelchairs means the Jensen's need more one-level open space so the boys can play and move independently. And since they require physical therapy daily to slow muscle wasting, they also need space for their therapy equipment such as parallel bars, walkers, and standers. Tanner and Skyler also need a wheelchair friendly place to play outside. They desire to play outside with their brothers and other children but are not strong enough to use their wheelchairs on the grass. Tanner and Skyler need opportunities to be like regular children- playing, growing and learning to be independent. Wouldnt it be nice to give them those opportunities too?
Lota's main goal for this fundraiser is to raise money to be used for medical expenses and anything Tanner and Skyler need to meet all their long term needs as they live and grow with SMA. Thank you all for your love and support.
Help Lota make a difference. You can also donate at America First Credit Union under "Tanner & Skyler Jensen Fund".
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