Help Brooklyn Walk
Donation protected
Brooklyn and her twin brother Logan were born 9 weeks early in May of 2014. They spent two weeks in the NICU at Dartmouth Medical Center and two weeks in the NICU at Wentworth Douglas Hospital both in New Hampshire. Brooklyn has since been diagnosed with PVL, Periventricular leukomalacia, a brain injury, most likely before birth. That diagnosis has been expanded to Spastic Diplegia Cerebral Palsy. Although Brooklyn is like most other little girls her age in most ways, she can not walk. At some time most likely before birth parts of the white matter in her brain were damaged. This has resulted in difficulties for messages to transmit, specifically in her legs. It affects motor function and the ability of muscles to act properly, leading to tight and rigid muscles (spasticity). This spasticity causes stiff legs, pain and the lack of ability to balance while standing. In time it can cause improper bone growth, which would result in less motor function and increased pain, and most likely other corrective surgeries. Brooklyn now has Physical Therapy three days a week to increase her mobility.
Unfortunately, Brooklyn’s mom Shelby is raising Brooklyn and Logan on her own. Her police officer husband, Pete, and father of Brooklyn and Logan, passed away suddenly in October of 2015 from sudden cardiac arrest. Brooklyn and Logan were only 17 months old at the time. Pete loved his family very much and also loved his country. He served many years in the Air Force and reserves, 18 years as a police officer, and a leader on the Seacoast Emergency Response Team (SERT). Pete would do anything for his family, but unfortunately he is no longer here to help Shelby with the decisions and finances that Brooklyn requires.
After much research and discussions with Brooklyn’s pediatrician and her doctors at both Boston Children’s Hospital and Dartmouth Medical Center, Shelby became aware of a surgery that can help Brooklyn walk and live a life free of pain from CP. The best place for this surgery is St. Louis Children’s Hospital in Missouri with Dr. T.S. Park. He is a world renowned doctor in this field and has performed over 3500 of these surgeries. No other doctor is as recognized, as practiced and as innovative, or has a higher success rate (of 100%) then Dr. Park at the Center of Cerebral Palsy Spasticity at St. Louis Children’s Hospital in Missouri. Dr. Park and his team have reviewed Brooklyn’s medical records, X-rays, and videos of her mobility and have accepted her as an excellent candidate for this surgery called Selective Dorsal Rhizotomy (SDR).
It is unclear how much of the cost of this surgery will be covered by her HMO insurance. It is out of network, but the insurance company has agreed to cover it as in network, but what that exactly means is not clear. Besides the actual cost of the surgery there are many additional costs involved including transportation to and from St. Louis, 9 day accommodations, food and expenses. In addition, it is required that a follow up 4 month visit back to see Dr. Park at St. Louis Children’s Hospital is required and possibly a 1 year follow up. Additional surgery for heel cord extension is a possibility depending on what is found. Following surgery there is a need for physical therapy five days a week for at least an hour daily for a year. Insurance will not cover all of this. The greatest benefit of this surgery is with the extensive five day PT.
Shelby is committed to this surgery for Brooklyn. St. Louis was able to schedule her surgery for August 2017 which would allow Shelby to not need to take time off from work as a teacher for the surgery, but it most likely will be necessary for the follow up appointment(s). This could possibly be unpaid time. After evaluating Brooklyn, Dr. Park and his team predict that this surgery will improve her sitting, standing, walking, movement, and balance, as well as her quality of life due to pain from the muscle tightness (spasticity). Dr. Park also predicted that Brooklyn will "walk independently in all environments". This is the best news that Shelby has heard in over a year and a half. She is so hopeful for Brooklyn’s future and knows that this is exactly what Pete would want for his precious Brooklyn.
If you are able to donate, even in any small amount, to help make this surgery for Brooklyn possible and less stressful for Shelby, her family would be eternally grateful. Any and all funds raised would be used directly for this opportunity for Brooklyn to walk and any future medical needs for Brooklyn. Even if you cannot help financially, your thoughts and prayers would be greatly appreciated. Shelby has to navigate this by herself without her husband’s strong arms and emotional support. She has to look out for the future of Brooklyn and Logan without their dad. In her heart she knows this is Brooklyn’s best chance for a normal life, with mobility and free of pain.
Thank you for taking the time to read this and to consider donating to Brooklyn’s opportunity to walk.
Unfortunately, Brooklyn’s mom Shelby is raising Brooklyn and Logan on her own. Her police officer husband, Pete, and father of Brooklyn and Logan, passed away suddenly in October of 2015 from sudden cardiac arrest. Brooklyn and Logan were only 17 months old at the time. Pete loved his family very much and also loved his country. He served many years in the Air Force and reserves, 18 years as a police officer, and a leader on the Seacoast Emergency Response Team (SERT). Pete would do anything for his family, but unfortunately he is no longer here to help Shelby with the decisions and finances that Brooklyn requires.
After much research and discussions with Brooklyn’s pediatrician and her doctors at both Boston Children’s Hospital and Dartmouth Medical Center, Shelby became aware of a surgery that can help Brooklyn walk and live a life free of pain from CP. The best place for this surgery is St. Louis Children’s Hospital in Missouri with Dr. T.S. Park. He is a world renowned doctor in this field and has performed over 3500 of these surgeries. No other doctor is as recognized, as practiced and as innovative, or has a higher success rate (of 100%) then Dr. Park at the Center of Cerebral Palsy Spasticity at St. Louis Children’s Hospital in Missouri. Dr. Park and his team have reviewed Brooklyn’s medical records, X-rays, and videos of her mobility and have accepted her as an excellent candidate for this surgery called Selective Dorsal Rhizotomy (SDR).
It is unclear how much of the cost of this surgery will be covered by her HMO insurance. It is out of network, but the insurance company has agreed to cover it as in network, but what that exactly means is not clear. Besides the actual cost of the surgery there are many additional costs involved including transportation to and from St. Louis, 9 day accommodations, food and expenses. In addition, it is required that a follow up 4 month visit back to see Dr. Park at St. Louis Children’s Hospital is required and possibly a 1 year follow up. Additional surgery for heel cord extension is a possibility depending on what is found. Following surgery there is a need for physical therapy five days a week for at least an hour daily for a year. Insurance will not cover all of this. The greatest benefit of this surgery is with the extensive five day PT.
Shelby is committed to this surgery for Brooklyn. St. Louis was able to schedule her surgery for August 2017 which would allow Shelby to not need to take time off from work as a teacher for the surgery, but it most likely will be necessary for the follow up appointment(s). This could possibly be unpaid time. After evaluating Brooklyn, Dr. Park and his team predict that this surgery will improve her sitting, standing, walking, movement, and balance, as well as her quality of life due to pain from the muscle tightness (spasticity). Dr. Park also predicted that Brooklyn will "walk independently in all environments". This is the best news that Shelby has heard in over a year and a half. She is so hopeful for Brooklyn’s future and knows that this is exactly what Pete would want for his precious Brooklyn.
If you are able to donate, even in any small amount, to help make this surgery for Brooklyn possible and less stressful for Shelby, her family would be eternally grateful. Any and all funds raised would be used directly for this opportunity for Brooklyn to walk and any future medical needs for Brooklyn. Even if you cannot help financially, your thoughts and prayers would be greatly appreciated. Shelby has to navigate this by herself without her husband’s strong arms and emotional support. She has to look out for the future of Brooklyn and Logan without their dad. In her heart she knows this is Brooklyn’s best chance for a normal life, with mobility and free of pain.
Thank you for taking the time to read this and to consider donating to Brooklyn’s opportunity to walk.
Organizer
Nancy Adams Fontaine
Organizer
Eliot, ME
