Katie's Medical Fund
Donation protected
Katie's Story
Katie is 13 years old, and was born with a progressive neuromuscular disease called Spinal Muscular Atrophy (SMA). Though Katie is a typical teen in most ways, she has endured loss of abilities over the years, due to the progressive muscle weakness from her disease. As a toddler she could stand with the help of leg braces; as she grew and her muscle strength did not, she became reliant on a fully motorized wheelchair. Katie’s family has dedicated themselves to doing what they can to help her enjoy the life she was given. Katie loves art, animals, hanging out with her parents and big sister, adaptive horseback riding, her annual week at MDA summer camp, and her ultimate freedom, being in the pool.
On Thursday, June 2, 2016, Katie came down with a typical cold virus. By the next night she was admitted to the ICU in respiratory distress. For SMA patients, any small illness can lead to devastating losses of health and abilities in a short period of time. In Katie’s case, her health deteriorated in a matter of days to the point of needing a ventilator in order to breathe. Doctors were successful in performing a tracheotomy so that they can hook the ventilator directly to an apparatus in her throat and also inserted a feeding tube for her directly into her stomach. This latest intervention resulted in the loss of her ability to speak.
The inability to speak combined with the previous loss of muscle control in her body, has basically trapped this beautiful, funny, articulate, caring, teenager inside her body. She is now reduced to trying to text with her fingers; then at times when she’s lost strength to move her fingers, she will use an alphabet board, letter by letter, signaling with her eyes to try to communicate. Having an incredible inner strength and spirit, Katie continues to work to make the best of it.
Both of Katie’s parents work full time and have health insurance. However, insurance will not cover the enormous financial burden of ongoing support and care needed for Katie’s lengthy recovery process. Neither of Katie’s parents are compensated for days they do not work, a situation which is expected to last for at least six weeks as they stay by her side in the hospital in these early days of her rapidly changing health conditions.
We are grateful for any and all financial assistance to get Katie and her family through this difficult period. All money raised will go directly to supporting Katie’s needs above and beyond what her insurance will cover, and any excess amounts will be donated to support research and treatment of Spinal Muscular Atrophy.
Thank you for all the concern, love, and support for Katie,
Lara Ziady
Friend of the Leadbeater/Scaccia family
For more information on SMA please visit curesma.org
Katie is 13 years old, and was born with a progressive neuromuscular disease called Spinal Muscular Atrophy (SMA). Though Katie is a typical teen in most ways, she has endured loss of abilities over the years, due to the progressive muscle weakness from her disease. As a toddler she could stand with the help of leg braces; as she grew and her muscle strength did not, she became reliant on a fully motorized wheelchair. Katie’s family has dedicated themselves to doing what they can to help her enjoy the life she was given. Katie loves art, animals, hanging out with her parents and big sister, adaptive horseback riding, her annual week at MDA summer camp, and her ultimate freedom, being in the pool.
On Thursday, June 2, 2016, Katie came down with a typical cold virus. By the next night she was admitted to the ICU in respiratory distress. For SMA patients, any small illness can lead to devastating losses of health and abilities in a short period of time. In Katie’s case, her health deteriorated in a matter of days to the point of needing a ventilator in order to breathe. Doctors were successful in performing a tracheotomy so that they can hook the ventilator directly to an apparatus in her throat and also inserted a feeding tube for her directly into her stomach. This latest intervention resulted in the loss of her ability to speak.
The inability to speak combined with the previous loss of muscle control in her body, has basically trapped this beautiful, funny, articulate, caring, teenager inside her body. She is now reduced to trying to text with her fingers; then at times when she’s lost strength to move her fingers, she will use an alphabet board, letter by letter, signaling with her eyes to try to communicate. Having an incredible inner strength and spirit, Katie continues to work to make the best of it.
Both of Katie’s parents work full time and have health insurance. However, insurance will not cover the enormous financial burden of ongoing support and care needed for Katie’s lengthy recovery process. Neither of Katie’s parents are compensated for days they do not work, a situation which is expected to last for at least six weeks as they stay by her side in the hospital in these early days of her rapidly changing health conditions.
We are grateful for any and all financial assistance to get Katie and her family through this difficult period. All money raised will go directly to supporting Katie’s needs above and beyond what her insurance will cover, and any excess amounts will be donated to support research and treatment of Spinal Muscular Atrophy.
Thank you for all the concern, love, and support for Katie,
Lara Ziady
Friend of the Leadbeater/Scaccia family
For more information on SMA please visit curesma.org
Organizer and beneficiary
Lara Ziady
Organizer
Louisville, CO
Jeannine Leadbeater Scaccia
Beneficiary