Breakthroughs for Billy - Fighting Against SMA
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Spinal Muscular Atrophy, or SMA, is one of those diseases you probably will not hear about until it affects someone you love. Then, it is devastating.
The Shirk Family's journey of confronting a hard to digest truth began late last year as their son, brave little Billy, neared his 1st birthday. There was concern when he wasn’t meeting his gross motor milestones—he had no interest in crawling, would not bear any weight on his legs, could not reach his arms over his head and was floppy when put in a sitting position. Everyone chalked it up to him being a super chunky, calm, content baby who just needed a little more time to support his weight. They tried not to worry and hoped for progress. He began early intervention physical therapy as recommended by his pediatrician and soon had PT incorporated into almost every part of his daily routine—playtime, bath time, meal time; he was constantly working those muscles, yet he wasn't really improving.
After another visit to the pediatrician, he went to see a pediatric neurologist and neuromuscular specialist at Children's Hospital of Philadelphia who, after a few rounds of testing, sorrowfully told the Shirks that their sweet little boy has a rare, serious genetic disease called Spinal Muscular Atrophy, or SMA. It is a condition that inhibits physical strength by affecting the motor nerve cells in the spinal cord that control voluntary movement, taking away the ability to walk, sit, eat or breathe. It is the number one genetic cause of death in infants. There is no cure.
Billy's parents, Bill and Amanda, are doing everything they can to get him the best possible care, which includes invasive treatments, physical therapy, occupational therapy and respiratory therapy, to improve his quality and length of life.
Since the day SMA became a part of their reality, the Shirk family’s life has been dramatically altered. As do all families who have children with crippling diseases, the Shirks must adjust many aspects of their lives—their home, their daily schedule and their future, a tremendous and never-ending undertaking. Your generous donations will help them with the financial strain associated with the progressive burden their family is facing.
While the future remains uncertain for Billy, there is every reason to be hopeful! Daily therapies and breakthrough medicines have already allowed him to make significant improvements to his physical health, despite his degenerative disease. Billy is brave, he is determined, he is full of life and his fighting spirit will let nothing stop him!
Follow Billy’s story and updates on Amanda Shirk's Facebook page.
Please share!
The Shirk Family's journey of confronting a hard to digest truth began late last year as their son, brave little Billy, neared his 1st birthday. There was concern when he wasn’t meeting his gross motor milestones—he had no interest in crawling, would not bear any weight on his legs, could not reach his arms over his head and was floppy when put in a sitting position. Everyone chalked it up to him being a super chunky, calm, content baby who just needed a little more time to support his weight. They tried not to worry and hoped for progress. He began early intervention physical therapy as recommended by his pediatrician and soon had PT incorporated into almost every part of his daily routine—playtime, bath time, meal time; he was constantly working those muscles, yet he wasn't really improving.
After another visit to the pediatrician, he went to see a pediatric neurologist and neuromuscular specialist at Children's Hospital of Philadelphia who, after a few rounds of testing, sorrowfully told the Shirks that their sweet little boy has a rare, serious genetic disease called Spinal Muscular Atrophy, or SMA. It is a condition that inhibits physical strength by affecting the motor nerve cells in the spinal cord that control voluntary movement, taking away the ability to walk, sit, eat or breathe. It is the number one genetic cause of death in infants. There is no cure.
Billy's parents, Bill and Amanda, are doing everything they can to get him the best possible care, which includes invasive treatments, physical therapy, occupational therapy and respiratory therapy, to improve his quality and length of life.
Since the day SMA became a part of their reality, the Shirk family’s life has been dramatically altered. As do all families who have children with crippling diseases, the Shirks must adjust many aspects of their lives—their home, their daily schedule and their future, a tremendous and never-ending undertaking. Your generous donations will help them with the financial strain associated with the progressive burden their family is facing.
While the future remains uncertain for Billy, there is every reason to be hopeful! Daily therapies and breakthrough medicines have already allowed him to make significant improvements to his physical health, despite his degenerative disease. Billy is brave, he is determined, he is full of life and his fighting spirit will let nothing stop him!
Follow Billy’s story and updates on Amanda Shirk's Facebook page.
Please share!
Organizer and beneficiary
William Shirk
Organizer
Skippack, PA
Amanda Shirk
Beneficiary