Lyla's Hope to help support those with spina bifida
Published: August 6, 2012
David McKeown/ Staff Photographer
Lyla Rose Salvadore smiles for the camera Friday afternoon at her home in Pattersonsville.
PATTERSONVILLE - Lyla Rose Salvadore was born with
spina bifida, but that has not stopped her from being all she can be,
taking on a new activity or adventure with the idea that, "But we can
try. We can try."
Those words are Lyla's reply when someone says that she should reconsider doing something that may be very difficult with her physical challenges. The five-year-old blonde girl usually gets her chance to try something new, being very persuasive with her courage, her bright eyes and a very wide smile.
Lyla sat near her grandmother, Sharon O'Brien Salvadore, Pattersonville, Union Township, during part of the interview, enjoying a turkey sandwich - a favorite - and showing off her small cup decorated with Winnie the Pooh, who she likes a lot, along with The Goonies.
When told she was so cute, Lyla looked up from her sandwich, gave a big smile, and without hesitation said, "Yeah!" She also has a cat named Hurley.
According to the Spina Bifida Association, spina bifida is the most common, permanently disabling birth defect in the United States. Spina bifida literally means "split spine." Spina bifida occurs when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have spina bifida or a similar birth defect of the brain and spine. The cause is unknown, though scientists believe that genetic and environmental factors act together to cause the condition.
Sharon Salvadore spoke of the process that led to wanting to help those children and families who may not have the support in dealing with spina bifida. She said families have so many "stressors" to deal with, having to get medical care at hospitals not near home, the time to care and the expenses, including gasoline for the long drives. Lyla had family support from her mother, Jade Rusk, and her fiance, John Houston, Salvadore and others.
"I would find myself asking myself what would people do if they didn't have family," Salvadore said. "What about these children who don't have a network to help them?"
Salvadore's idea to find ways to help others came through information on the United by Spina Bifida website and a reunion of children with the condition at Children's Hospital of Philadelphia, where she learned of specific needs.
"That was when I said that we could do this, find some people to come on board, and a group of us can raise money," Salvadore said. "And through the network of friends we were making on the Internet, we can start helping them."
Salvadore said the requests that were answered have been small up until recently, but with the 501(c)3 status in place, the opportunity to help in a larger capacity is available.
"Now, we're really going to move forward and go big, because there are a lot of families who need help," Salvadore said.
"She (Lyla) doesn't have any limits. She just goes and does," Rusk said.
Lyla was diagnosed before she was born, and Rusk was told about the many potential problems Lyla would have after she was born.
"The doctors would mention the problems, but then would add 'We're not sure,'" Rusk said. "They were like horror stories. Every negative thing they could say they did. And even after she was born, they said that she might not walk or other things, and all the things they were not sure of and wouldn't be able to do, she has done."
While Lyla needs a walker to help get around, for short distances, she made short walks across the room several times, going back and forth between her sandwich and Rusk and Houston.
Lyla attended pre-kindergarten last year, and will enter kindergarten for the new school year at North Schuylkill Elementary School.
In May, Lyla's Hope received its 501(3)c status from the federal government. The specific objectives and purposes of this non-profit corporation are:
jusalis@republicanherald.com
Those words are Lyla's reply when someone says that she should reconsider doing something that may be very difficult with her physical challenges. The five-year-old blonde girl usually gets her chance to try something new, being very persuasive with her courage, her bright eyes and a very wide smile.
Lyla sat near her grandmother, Sharon O'Brien Salvadore, Pattersonville, Union Township, during part of the interview, enjoying a turkey sandwich - a favorite - and showing off her small cup decorated with Winnie the Pooh, who she likes a lot, along with The Goonies.
When told she was so cute, Lyla looked up from her sandwich, gave a big smile, and without hesitation said, "Yeah!" She also has a cat named Hurley.
According to the Spina Bifida Association, spina bifida is the most common, permanently disabling birth defect in the United States. Spina bifida literally means "split spine." Spina bifida occurs when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have spina bifida or a similar birth defect of the brain and spine. The cause is unknown, though scientists believe that genetic and environmental factors act together to cause the condition.
Sharon Salvadore spoke of the process that led to wanting to help those children and families who may not have the support in dealing with spina bifida. She said families have so many "stressors" to deal with, having to get medical care at hospitals not near home, the time to care and the expenses, including gasoline for the long drives. Lyla had family support from her mother, Jade Rusk, and her fiance, John Houston, Salvadore and others.
"I would find myself asking myself what would people do if they didn't have family," Salvadore said. "What about these children who don't have a network to help them?"
Salvadore's idea to find ways to help others came through information on the United by Spina Bifida website and a reunion of children with the condition at Children's Hospital of Philadelphia, where she learned of specific needs.
"That was when I said that we could do this, find some people to come on board, and a group of us can raise money," Salvadore said. "And through the network of friends we were making on the Internet, we can start helping them."
Salvadore said the requests that were answered have been small up until recently, but with the 501(c)3 status in place, the opportunity to help in a larger capacity is available.
"Now, we're really going to move forward and go big, because there are a lot of families who need help," Salvadore said.
"She (Lyla) doesn't have any limits. She just goes and does," Rusk said.
Lyla was diagnosed before she was born, and Rusk was told about the many potential problems Lyla would have after she was born.
"The doctors would mention the problems, but then would add 'We're not sure,'" Rusk said. "They were like horror stories. Every negative thing they could say they did. And even after she was born, they said that she might not walk or other things, and all the things they were not sure of and wouldn't be able to do, she has done."
While Lyla needs a walker to help get around, for short distances, she made short walks across the room several times, going back and forth between her sandwich and Rusk and Houston.
Lyla attended pre-kindergarten last year, and will enter kindergarten for the new school year at North Schuylkill Elementary School.
In May, Lyla's Hope received its 501(3)c status from the federal government. The specific objectives and purposes of this non-profit corporation are:
- To provide material support for children with neural tube defects, including but not limited to braces and accessories for the feet, such as shoes, socks and boots.
- To provide catheters and accessories, diapers and non-latex items along with medical supplies.
- To provide therapy services and equipment.
- To assist with transportation during medical emergency and/or hospital stays.
jusalis@republicanherald.com
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