Paisley Beane Hospital Stay
Donation protected
Paisley Beane is a 6 year old girl who has a rare genetic condition called Spondyloepiphyseal Dysplasia Congenita. Our journey began when I was 31 weeks pregnant and abnormalities were detected during an elective 3D ultrasound. After extensive testing and further ultrasounds, we learned that Paisley would be born with an unspecified type of skeletal dysplasia. At her 18 month routine physical, her pediatrician noticed a curve in her spine. From there, we were referred to specialists to help us explore her condition and determine next steps. At 22 months old, Paisley received her first back brace. As her spinal curve progressed, we learned that spinal surgery was in her future. We actively sought multiple medical opinions and exhausted many less invasive procedures in an attempt to slow the progression of the curve and delay the need for spinal surgery.
At this point, doctors have helped us understand that we are out of options due to the severity of the curve. With the help of an excellent medical team, we made the difficult decision to proceed with spinal surgery.
In her 6 years, Paisley has worn multiple back braces, had two leg surgeries, worn several permanent back casts, and most recently, she has had two emergency eye surgeries to correct a detached retina. Throughout this journey, Paisley has remained optimistic and adaptable in increasingly difficult situations. She is a fighter, and has shown such bravery with every obstacle as we continue to learn how she is affected by her condition. The upcoming procedure will be the most challenging to date for many reasons.
In early September, we will travel to Philadelphia to begin a multistep procedure. Paisley will be in Halo Traction for several weeks in an effort to straighten her spine before rods are placed in October. She will remain hospitalized for multiple weeks during this time. Although we have amazing support from all of her family and friends, this will be mentally and physically exhausting for Paisley. As a counselor for Caldwell County Schools, I am thankful to have been granted a leave of absence that allows me to stay with her throughout the entire hospitalization. Unfortunately, medical and travel expenses will continue to accrue throughout her hospitalization, and she faces at least one more additional eye surgery upon her return home. Any donations will be used for medical, travel, and other logistics related to her condition and upcoming hospitalization.
I am so proud to be her mother, and I know that her spunky spirit and resilient attitude will serve her well as we navigate the difficult weeks ahead. Thank you for your continued prayers for Paisley and our family. I will continue to update this page throughout our time in Philadelphia.
With gratitude-
Jessica
At this point, doctors have helped us understand that we are out of options due to the severity of the curve. With the help of an excellent medical team, we made the difficult decision to proceed with spinal surgery.
In her 6 years, Paisley has worn multiple back braces, had two leg surgeries, worn several permanent back casts, and most recently, she has had two emergency eye surgeries to correct a detached retina. Throughout this journey, Paisley has remained optimistic and adaptable in increasingly difficult situations. She is a fighter, and has shown such bravery with every obstacle as we continue to learn how she is affected by her condition. The upcoming procedure will be the most challenging to date for many reasons.
In early September, we will travel to Philadelphia to begin a multistep procedure. Paisley will be in Halo Traction for several weeks in an effort to straighten her spine before rods are placed in October. She will remain hospitalized for multiple weeks during this time. Although we have amazing support from all of her family and friends, this will be mentally and physically exhausting for Paisley. As a counselor for Caldwell County Schools, I am thankful to have been granted a leave of absence that allows me to stay with her throughout the entire hospitalization. Unfortunately, medical and travel expenses will continue to accrue throughout her hospitalization, and she faces at least one more additional eye surgery upon her return home. Any donations will be used for medical, travel, and other logistics related to her condition and upcoming hospitalization.
I am so proud to be her mother, and I know that her spunky spirit and resilient attitude will serve her well as we navigate the difficult weeks ahead. Thank you for your continued prayers for Paisley and our family. I will continue to update this page throughout our time in Philadelphia.
With gratitude-
Jessica
Organizer
Rebecca Baker
Organizer
Lenoir, NC