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Paige Lenk's Fundraiser:

Paige's Building Muscles for a Cure

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owner profile imageHope for a Cure/Thank-You!
August 22, 2016

Thank-You to our first donation from the Joe and Tiffany Orsello Family! We appreciate your donation and are thankful for friends like you! The  See more
Paige Lenk


I have decided to create this fundraiser because I know first hand how important the continued research and advances are to those who are affected by Spinal Muscular Atrophy as my family has had to deal with this devistating disease which ultimately took the life of my sister Jillian Kay Lenk. On the 7th of June 2001 our lives would take an abrupt turn. This is the day my sister Jillian Kay Lenk was born. Prior to her birth my mother had felt something was wrong. Jillian had not been moving as much as previously before, which any mother knows is a sign there may be a complication. I remember vividly that day what happened. It was summer so we were at the hospital at the time. My mother had to have a C-Section with my sister but it seemed like she was in there forever. I remember looking through the delivery room blinds and the doctors and nurses were moving quickly and there were many tubes and lines everywhere. The burden we were about to face was only beginning. She was put in an incubator that are used for NICU babies and my mother, not yet safe to leave the hospital had to painstakingly let them take her baby from her and air lift her to North Memorial Medical Center where they were more equipped to take care of her. We didn't have any idea that the culprit behind Jillians issues were until the day they informed my parents that Jillian was diagnosed with Spinal Muscular Atrophy (SMA). SMA is a genetic disorder that robs people of their strength by affecting their motto cells in their spinal cord stealing from them the ability to do basic, yet necessary parts of everyday living such as walking, eating and breathing. It is the number one cause of death to infants. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In healthy people this gene in the body produces an important protein that is vital to the function of the nerves in the body that control our muscles. Thus, without it the neves cannot properly work and they eventually die. This may not mean much to some people but what that means is it starts a debilitating process that more than often becomes fatal muscle weakness, your muscles don't work practically everything in your body fails to work as well. This disease affects approximately 1 in 10,000 babies and about 1 in every 50 Americans is a genetic carrier. There are 4 types (1, 2, 3, and 4). This disease however has nothing to do with intelledtual or social functions, In fact a lot of these kids are very smart and do well socially it's just their muscles basically don't work like they should. Unfortunately for my parents, there were so many variables to this disease and so much unknown factors making it hard for them to see any hope for Jillian. The doctors were telling my parents that for her to leave the hospital and come home she would have needing 24 hour nursing care and that more than likely she would only live to see age 2, and more than likely would die from a secondary complication of pneumonia versus SMA stealing her precious life. She lived 21 precious days on this earth in which time she was baptized and touched so many lives before my parents ultimately chose to take her off life support. She gained her angel wings on 7-28-2001. Though much time has passed there is not a day I don't think about her and think of all the things that we could be doing today. That is why it is inportant to me to raise money for SMA Research to help all those affected by SMA, to help find a cure. There are many promising trials occurring right now that the FDA has approved. Stem cells have been thought to be of benefit as well. I am asking my friends and family to help me with my cause. Anything you can give would be greatly appreciated. I am participating in the Rugged Maniac 5K to use my muscles to get through the 3 miles of obstacles in hopes to help benefit the SMA Foundationll proceeds donated will go directly to the SMA Foundation. Thank-You in advance for listening to my story!


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  • Joe, Tiffany, and Joey Orsello



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Donor Comments

Joe, Tiffany, and Joey Orsello

Joe, Tiffany, and Joey Orsello


Way to fight for the cure! 3 years ago