Medical needs for Austen
Donation protected
A year and half ago, the unthinkable happened. My son woke up and was unable to feel his legs after a slow decline over the course of several months. He took it like a champ. He always held a positive attitude and wore a smile on his face.
As he entered the hospital he endured test after test with bravery and courage. He had spinal taps, imaging and conductive tests to no avail. They had no answers. A year of therapy, a switch in medicine and tons of doctors later he began the road to recovery. He was getting strong, continuing his quest to become a black belt and crushing his first year of middle school. We were riding high.
This past February, I received a call from his nurse saying that his face was twitching and he was having trouble with his upper body strength. The nightmare began Again. He entered VCU on February 24th after two previous trips to the hospital yielded no answers. He stayed for over a month as they studied him trying to figure out what had happened. They found one. He has a couple of rare genetic mutations that only three people in the world have. There are no numbers, no data and a bunch of questions. When will the weakness stop? When will the decline end? Will Austen ever be the active kid he used to be in his wild Bilateral AFOs for his cerebral palsy.
He now has no upper body strength, can barely hold his head up and has so much trouble speaking his unintelligible. The worst part is that he understands his position and is constantly afraid of being teased. My once happy, strong boy is caving under the pressure of his situation of a life filled with doctors, someone caring for everything and stares. He has to wear diapers and needs assistance for the most basic of things.
We have ran through all of our savings trying to keep up with travel, copays and his needs. The stress on our girls is unimaginable with My 14 year old often crying at the state of her younger brother and our family reeling from what has happened.
A motorized wheelchair is needed as he is no longer able to propel himself with his old chair. A mobility van is an absolute necessity to transport him in his new chair. He can no longer transfer into the chair of the van. It takes Mike and I to get him in safely. He needs a safer shower chair so that he can get from his chair into the shower safely. A hospital bed is necessary as he is a fall risk and would not be able to get up or hurt himself. He needs a stander to help get some weight bearing into his lower extremities to avoid contractures in his legs as he continues to lose muscle mass.
The worst part is that we are in a constant battle with the insurance companies with so many of his supplies being denied or having such large copays that it is impossible to obtain the items he needs. The strain is immense and we have no idea how to find our way.
As he entered the hospital he endured test after test with bravery and courage. He had spinal taps, imaging and conductive tests to no avail. They had no answers. A year of therapy, a switch in medicine and tons of doctors later he began the road to recovery. He was getting strong, continuing his quest to become a black belt and crushing his first year of middle school. We were riding high.
This past February, I received a call from his nurse saying that his face was twitching and he was having trouble with his upper body strength. The nightmare began Again. He entered VCU on February 24th after two previous trips to the hospital yielded no answers. He stayed for over a month as they studied him trying to figure out what had happened. They found one. He has a couple of rare genetic mutations that only three people in the world have. There are no numbers, no data and a bunch of questions. When will the weakness stop? When will the decline end? Will Austen ever be the active kid he used to be in his wild Bilateral AFOs for his cerebral palsy.
He now has no upper body strength, can barely hold his head up and has so much trouble speaking his unintelligible. The worst part is that he understands his position and is constantly afraid of being teased. My once happy, strong boy is caving under the pressure of his situation of a life filled with doctors, someone caring for everything and stares. He has to wear diapers and needs assistance for the most basic of things.
We have ran through all of our savings trying to keep up with travel, copays and his needs. The stress on our girls is unimaginable with My 14 year old often crying at the state of her younger brother and our family reeling from what has happened.
A motorized wheelchair is needed as he is no longer able to propel himself with his old chair. A mobility van is an absolute necessity to transport him in his new chair. He can no longer transfer into the chair of the van. It takes Mike and I to get him in safely. He needs a safer shower chair so that he can get from his chair into the shower safely. A hospital bed is necessary as he is a fall risk and would not be able to get up or hurt himself. He needs a stander to help get some weight bearing into his lower extremities to avoid contractures in his legs as he continues to lose muscle mass.
The worst part is that we are in a constant battle with the insurance companies with so many of his supplies being denied or having such large copays that it is impossible to obtain the items he needs. The strain is immense and we have no idea how to find our way.
Organizer
Candice Wendt
Organizer
Newport News, VA