Brave Brooklynn Wants to Walk Forever
Donation protected
84 days until surgery day!
When Brooklynn was 6, she was diagnosed with Diplegia Cerebral Palsy. Cerebral Palsy is usually caused in babies that are born premature or who experience a form of brain trauma at birth. Neither of these scenarios were true for Brooklynn. She has been a puzzle to many! We’ve seen specialists in Peoria and Chicago and she continued to be a mystery case. However, I was not going to give up. I wanted answers and wanted to know her prognosis. It is heart breaking and frustrating to hear your child's condition is a mystery.
Finally in October, 2018 we started the referral process to Dr. Park, who is a world class neurosurgeon at Saint Louis Children’s Hospital. For the first time, I felt truly encouraged in my quest for answers. In January 2019, we got the call informing us we had been approved for a consultation with Dr. Park. This was an incredible feeling!
We finally met Dr. Park on March 11, 2019. I immediately felt like God had finally put us where we needed to be to get some answers. Dr. Park acknowledged that Brooklynn is unique, however he didn’t dismiss our concerns. Instead he explained that she possibly has a rare condition called Hereditary Spastic Paraplegia. This condition mimics Cerebral Palsy, only it's genetic and is degenerative. He also explained that HSD and Diplegic Cerebral Palsy cause severe spasticity. Spasticity, if not treated can cause major damage to bone and muscles.
Dr. Park strongly recommends that Brooklynn have a major surgery called Selective Dorsal Rhizotomy to treat the spasticity. Without this surgery, Brooklynn will become wheelchair dependent at a very young age.
The surgery will require a lengthy hospital stay in Saint Louis, followed by several months of intense physical therapy. We do have medical insurance, but will have some out of pocket expenses. For example, physical therapy alone is approximately $2,000!
In addition to medical expenses, there will be loss of income while we care for Brooklynn in the weeks after surgery.
We are asking for any donations that will help offset our expenses while we finish this next leg in our journey. Most of all, we are asking for prayers for Brooklynn and all of the other families who have been touched by Cerebral Palsy or Hereditary Spastic Paraplegia.
Also, please say a prayer of thanks for Dr. Park. He has been a godsend to so many!
When Brooklynn was 6, she was diagnosed with Diplegia Cerebral Palsy. Cerebral Palsy is usually caused in babies that are born premature or who experience a form of brain trauma at birth. Neither of these scenarios were true for Brooklynn. She has been a puzzle to many! We’ve seen specialists in Peoria and Chicago and she continued to be a mystery case. However, I was not going to give up. I wanted answers and wanted to know her prognosis. It is heart breaking and frustrating to hear your child's condition is a mystery.
Finally in October, 2018 we started the referral process to Dr. Park, who is a world class neurosurgeon at Saint Louis Children’s Hospital. For the first time, I felt truly encouraged in my quest for answers. In January 2019, we got the call informing us we had been approved for a consultation with Dr. Park. This was an incredible feeling!
We finally met Dr. Park on March 11, 2019. I immediately felt like God had finally put us where we needed to be to get some answers. Dr. Park acknowledged that Brooklynn is unique, however he didn’t dismiss our concerns. Instead he explained that she possibly has a rare condition called Hereditary Spastic Paraplegia. This condition mimics Cerebral Palsy, only it's genetic and is degenerative. He also explained that HSD and Diplegic Cerebral Palsy cause severe spasticity. Spasticity, if not treated can cause major damage to bone and muscles.
Dr. Park strongly recommends that Brooklynn have a major surgery called Selective Dorsal Rhizotomy to treat the spasticity. Without this surgery, Brooklynn will become wheelchair dependent at a very young age.
The surgery will require a lengthy hospital stay in Saint Louis, followed by several months of intense physical therapy. We do have medical insurance, but will have some out of pocket expenses. For example, physical therapy alone is approximately $2,000!
In addition to medical expenses, there will be loss of income while we care for Brooklynn in the weeks after surgery.
We are asking for any donations that will help offset our expenses while we finish this next leg in our journey. Most of all, we are asking for prayers for Brooklynn and all of the other families who have been touched by Cerebral Palsy or Hereditary Spastic Paraplegia.
Also, please say a prayer of thanks for Dr. Park. He has been a godsend to so many!
Organizer
Sharlena Stewart-Nofsinger
Organizer
Washington, IL
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