Homeruns That Help Sophia!
Donation protected
My son Tyler Nelson is an 8th grade student at St. Mary of Crown Point, IN and he will be participating in the 10th annual Power Showcase Homerun Derby December 28, 2015 held at Major League Baseball’s Marlins Stadium in Miami, Florida. “Homeruns That Help” is the community outreach initiative of the Power Showcase that provides an avenue for the selected sluggers to help someone that is suffering from a life-threatening medical condition, disability, or has special needs. All of the home runs hit by the participant are done to help raise financial contributions and are dedicated to that special individual.
Tyler is helping to raise money through “Homeruns That Help” and is sponsoring Sophia Burke, who is a 13 year old girl who is diagnosed with Rett Syndrome.
Rett Syndrome is a debilitating neurological/movement disorder seen almost exclusively in females. It is as prevalent as ALS, Cystic Fibrosis, and Huntington's disease, yet many people don't even know it exists. Sophia no longer attends school, and is homebound. She can no longer walk, talk, eat by mouth, or has purposeful use of her hands. Sophia suffers from regular, almost daily seizures. She takes multiple medications, multiple times a day and has a VNS implant to also help control them. Additionally, in April 2013 Sophia was also diagnosed with CVID (Common variable immunodeficiency.) CVID is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. Basically, Sophia doesn't have very much of an immune system, and there's no known reason or cause. As a result her body cannot fight infections like most peoples can. They are treating it the best they can with regular IVIG infusions. Currently, she goes every 2.5 weeks for her infusions, which take 5-6 hours to administer. Sophia spent 9 of 17 months in the PICU recovering from surgeries, and/or fighting severe infections. Sophia has been though more in her young life, then most people will endure in their lifetime. She handles it all with dignity and grace; seldom shedding a tear. She has the most amazing, welcoming, and beautiful smile... It can light up even the darkest days. Her eyes speak the words she can no longer say... She is strong. She is brave.
Sophia's trips back and forth to the hospital are vital to her care and well-being. She must travel over an hour each way. In addition to going for her IVIG she also sees multiple doctors, regularly. When she is healthy and stable she typically has 6-7 appointments at the hospital every month. The family needs a special van with a lift that is required to transport Sophia. The van is the only way the family can take Sophia to the doctors and to get the infusions she so desperately needs to simply survive. The donations raised will be used to help the family pay off the remaining cost for the van.
Tyler hopes to raise money through this Go-Fund account and also boost Sophia’s spirits by hitting some Homeruns at the Power Showcase Homerun Derby. Tyler met with Sophia and learned first-hand about Rett Syndrome, and communicated with Sophia through the use of her Tobii. Tyler is committed to doing his best to see a smile on Sophia’s face as well as help spread awareness of Rett Syndrome. Please consider this time of giving to help support Sophia and her family.
Visit: http://www.power-showcase.com to find out more about the event that takes place December 28 through January 2nd.
Tyler is helping to raise money through “Homeruns That Help” and is sponsoring Sophia Burke, who is a 13 year old girl who is diagnosed with Rett Syndrome.
Rett Syndrome is a debilitating neurological/movement disorder seen almost exclusively in females. It is as prevalent as ALS, Cystic Fibrosis, and Huntington's disease, yet many people don't even know it exists. Sophia no longer attends school, and is homebound. She can no longer walk, talk, eat by mouth, or has purposeful use of her hands. Sophia suffers from regular, almost daily seizures. She takes multiple medications, multiple times a day and has a VNS implant to also help control them. Additionally, in April 2013 Sophia was also diagnosed with CVID (Common variable immunodeficiency.) CVID is a disorder characterized by low levels of serum immunoglobulins (antibodies) and an increased susceptibility to infections. Basically, Sophia doesn't have very much of an immune system, and there's no known reason or cause. As a result her body cannot fight infections like most peoples can. They are treating it the best they can with regular IVIG infusions. Currently, she goes every 2.5 weeks for her infusions, which take 5-6 hours to administer. Sophia spent 9 of 17 months in the PICU recovering from surgeries, and/or fighting severe infections. Sophia has been though more in her young life, then most people will endure in their lifetime. She handles it all with dignity and grace; seldom shedding a tear. She has the most amazing, welcoming, and beautiful smile... It can light up even the darkest days. Her eyes speak the words she can no longer say... She is strong. She is brave.
Sophia's trips back and forth to the hospital are vital to her care and well-being. She must travel over an hour each way. In addition to going for her IVIG she also sees multiple doctors, regularly. When she is healthy and stable she typically has 6-7 appointments at the hospital every month. The family needs a special van with a lift that is required to transport Sophia. The van is the only way the family can take Sophia to the doctors and to get the infusions she so desperately needs to simply survive. The donations raised will be used to help the family pay off the remaining cost for the van.
Tyler hopes to raise money through this Go-Fund account and also boost Sophia’s spirits by hitting some Homeruns at the Power Showcase Homerun Derby. Tyler met with Sophia and learned first-hand about Rett Syndrome, and communicated with Sophia through the use of her Tobii. Tyler is committed to doing his best to see a smile on Sophia’s face as well as help spread awareness of Rett Syndrome. Please consider this time of giving to help support Sophia and her family.
Visit: http://www.power-showcase.com to find out more about the event that takes place December 28 through January 2nd.
Organizer
Bill Nelson
Organizer
Crown Point, IN
