Sara's Lung Transplant
Donation protected
Hi I am Bonnie, grandmother to my cherished twin grandchildren Sara and Seth who are fifteen years old. Sara is currently waiting to be called for a Double Lung Transplant. It is with a heavy heart that I am reaching out to a Go Fund Me fundraiser for our precious Sara's medical expenses above insurance, immunosuppressive drugs, medical air flight, ground ambulance and additional living expenses the family will be faced with.
Sara's transplant will be done in Pittsburgh, PA which is nine hours from the family's home in North Carolina. We have been informed that with no complications the minimum required stay in Pittsburgh after surgery will be at least six weeks. Post-surgery the next two years will bring frequent trips and stays to Pittsburgh. The transplant team in Pittsburgh has advised the family to start fundraising to help relieve the financial burdens. It was very difficult for the family to make the decision for charity but they cannot overcome this without help.
In 2018 Sara was diagnosed with Restrictive Pulmonary Disease. Sara has continued to decline since being diagnosed and in December 2019 she was referred to University of Pittsburgh Medical Center Children's Hospital for a lung transplant evaluation. UPMCCH transplant team determined it was for the best that Sara be placed on the national lung transplant list as soon as possible. As of May 2020 she was officially placed on the list!
To our amazement in less than one week Sara's number has come up two times but due to medical criteria Sara's doctor did not accept the donor lungs. Needless to say this was a big wake-up call for us that transplant could happen sooner than what we expected. We need to get prepared as much as we can! Not sure it's possible to be prepared for something this frightening for a family.
Sara's lungs have severe scar tissue. At present time she has a lung capacity of only 15% and is on continuous flow of five liters of oxygen. Although rare and unconfirmed, the only explanation for the lung disease is possibly the hard core chemo drugs she received during her first eight years of life after being diagnosed at nine months old with a very rare brain tumor. ** (Read Sara's Journey below)**
I would like to introduce you to the family and especially tell you about our special Sara. My daughter Laura is Sara & Seth's mom and my son-n-law Erik is their dad. Laura is a Registered (Oncology) Nurse and Erik is an Assistant Maintenance Manager for a golf course. Sara's twin Seth is looking forward to his first year on the varsity football team. Laura and Erik were both born and raised in St Petersburg, Florida and the twins were also born in St Petersburg. After vacationing often in the Western North Carolina Mountains, in 2016 the family decided to leave the city life and move to the small mountain town of Hayesville, North Carolina where they currently live.
Beautiful Sara
Sara has always been so active and has a love for the outdoors and physical activity despite all of her health issues in her young life. Running, skating, swimming and most of all riding roller coasters were her most favorite activities. With the move to NC Sara was looking forward to starting middle school and planned on being on the track team. Unfortunately less than one year after moving Sara began to have breathing issues and began declining quickly. She could no longer enjoy the activities she once did. Sara had begun taking horseback riding lessons and enjoyed it so much. Like most girls Sara yearned to have her own horse. In September 2018 (thanks to Grandpa Paul) her dream came true and she became the proud owner of "Winston". Even though Sara cannot ride like she once could Winston is a big part of Sara's life and brings much joy and peace to her!
Sara is very petite but her heart and personality are huge!!! She has accepted her disease and disability even though she can no longer attend school or enjoy all the activities she once loved. She is a brave young girl and knows her life could be short but she embraces each day with a positive and loving attitude! She is a beautiful and sweet girl who is admired and loved so very much. Our family is so very proud of her bravery. Sara's beautiful spirit shines despite all of her handicaps and complications.
Our Gratitude
Our family is focused on Sara's care and making sure every day is a good day for her and asking the Lord to continue to surround her with strength and bravery as she faces another devastating challenge in her young life. We cannot express how much we appreciate your support and donations which will greatly relieve some stress for the family as we care for Sara and await that very important phone call. It is a very hard time for many due to the pandemic and if you are unable to donate you can help by praying for Sara and adding her to prayer list. Please help by forwarding her information to others. To help get the word out, you can share the link to your Facebook Timeline! gofundme.com/f/wwwgofundmecomsaratransplant
We are forever grateful and blessed for your support, prayers and help!
With gratitude, God Bless
Bonnie
"Sara's Journey"
Sara's medial journey began at nine months of age when diagnosed with a very rare brain tumor. She had surgery right away to remove the tumor. Unfortunately the surgeon was unable to remove it completely and family was told there was no known treatment for this type of tumor. The family reached out to the Pediatric Brain Tumor Center at Duke University. Through Duke's protocl Sara was on a chemo program for the next 14 months. In 2007 a new tumor showing progressive signs and growth required another surgery which was performed at Duke. The surgery was successful and Sara was finally able to be off chemo and experience a normal life. The following two years Sara and her family lived a normal life while Sara had follow-up MRIs every four months. On July 1, 2009 family received devastating news that Sara had two tumors deep in the left side of her brain. Surgery was not an option and chemo began again. After 22 months of chemo the side effects were taking a toll so the doctor stopped the chemo. The tumors were still there but did not appear to be active. Eleven months later in 2012 they became active and growth started again. Due to all of the toxicities of the chemo drugs Sara had received the doctor felt a different approach was needed. Sara was referred to UPMCCH for an immunotherapy trial. The trial was unsuccessful for Sara's tumor. The Oncologist in Pittsburgh referred the family to Dr. Lundsford a neurosurgeon at UPMC. He was a founder of Gamma Knife and was the only surgeon who would perform Gamma Knife on a child. He agreed that Sara was a good candidate and July 2013 Gamma Knife was performed and was successful. To present date Sara continues to have follow-up MRIs every six months and praise the Lord the tumor remains inactive.
Thank you for reading.
Sara's transplant will be done in Pittsburgh, PA which is nine hours from the family's home in North Carolina. We have been informed that with no complications the minimum required stay in Pittsburgh after surgery will be at least six weeks. Post-surgery the next two years will bring frequent trips and stays to Pittsburgh. The transplant team in Pittsburgh has advised the family to start fundraising to help relieve the financial burdens. It was very difficult for the family to make the decision for charity but they cannot overcome this without help.
In 2018 Sara was diagnosed with Restrictive Pulmonary Disease. Sara has continued to decline since being diagnosed and in December 2019 she was referred to University of Pittsburgh Medical Center Children's Hospital for a lung transplant evaluation. UPMCCH transplant team determined it was for the best that Sara be placed on the national lung transplant list as soon as possible. As of May 2020 she was officially placed on the list!
To our amazement in less than one week Sara's number has come up two times but due to medical criteria Sara's doctor did not accept the donor lungs. Needless to say this was a big wake-up call for us that transplant could happen sooner than what we expected. We need to get prepared as much as we can! Not sure it's possible to be prepared for something this frightening for a family.
Sara's lungs have severe scar tissue. At present time she has a lung capacity of only 15% and is on continuous flow of five liters of oxygen. Although rare and unconfirmed, the only explanation for the lung disease is possibly the hard core chemo drugs she received during her first eight years of life after being diagnosed at nine months old with a very rare brain tumor. ** (Read Sara's Journey below)**
I would like to introduce you to the family and especially tell you about our special Sara. My daughter Laura is Sara & Seth's mom and my son-n-law Erik is their dad. Laura is a Registered (Oncology) Nurse and Erik is an Assistant Maintenance Manager for a golf course. Sara's twin Seth is looking forward to his first year on the varsity football team. Laura and Erik were both born and raised in St Petersburg, Florida and the twins were also born in St Petersburg. After vacationing often in the Western North Carolina Mountains, in 2016 the family decided to leave the city life and move to the small mountain town of Hayesville, North Carolina where they currently live.
Beautiful Sara
Sara has always been so active and has a love for the outdoors and physical activity despite all of her health issues in her young life. Running, skating, swimming and most of all riding roller coasters were her most favorite activities. With the move to NC Sara was looking forward to starting middle school and planned on being on the track team. Unfortunately less than one year after moving Sara began to have breathing issues and began declining quickly. She could no longer enjoy the activities she once did. Sara had begun taking horseback riding lessons and enjoyed it so much. Like most girls Sara yearned to have her own horse. In September 2018 (thanks to Grandpa Paul) her dream came true and she became the proud owner of "Winston". Even though Sara cannot ride like she once could Winston is a big part of Sara's life and brings much joy and peace to her!
Sara is very petite but her heart and personality are huge!!! She has accepted her disease and disability even though she can no longer attend school or enjoy all the activities she once loved. She is a brave young girl and knows her life could be short but she embraces each day with a positive and loving attitude! She is a beautiful and sweet girl who is admired and loved so very much. Our family is so very proud of her bravery. Sara's beautiful spirit shines despite all of her handicaps and complications.
Our Gratitude
Our family is focused on Sara's care and making sure every day is a good day for her and asking the Lord to continue to surround her with strength and bravery as she faces another devastating challenge in her young life. We cannot express how much we appreciate your support and donations which will greatly relieve some stress for the family as we care for Sara and await that very important phone call. It is a very hard time for many due to the pandemic and if you are unable to donate you can help by praying for Sara and adding her to prayer list. Please help by forwarding her information to others. To help get the word out, you can share the link to your Facebook Timeline! gofundme.com/f/wwwgofundmecomsaratransplant
We are forever grateful and blessed for your support, prayers and help!
With gratitude, God Bless
Bonnie
"Sara's Journey"
Sara's medial journey began at nine months of age when diagnosed with a very rare brain tumor. She had surgery right away to remove the tumor. Unfortunately the surgeon was unable to remove it completely and family was told there was no known treatment for this type of tumor. The family reached out to the Pediatric Brain Tumor Center at Duke University. Through Duke's protocl Sara was on a chemo program for the next 14 months. In 2007 a new tumor showing progressive signs and growth required another surgery which was performed at Duke. The surgery was successful and Sara was finally able to be off chemo and experience a normal life. The following two years Sara and her family lived a normal life while Sara had follow-up MRIs every four months. On July 1, 2009 family received devastating news that Sara had two tumors deep in the left side of her brain. Surgery was not an option and chemo began again. After 22 months of chemo the side effects were taking a toll so the doctor stopped the chemo. The tumors were still there but did not appear to be active. Eleven months later in 2012 they became active and growth started again. Due to all of the toxicities of the chemo drugs Sara had received the doctor felt a different approach was needed. Sara was referred to UPMCCH for an immunotherapy trial. The trial was unsuccessful for Sara's tumor. The Oncologist in Pittsburgh referred the family to Dr. Lundsford a neurosurgeon at UPMC. He was a founder of Gamma Knife and was the only surgeon who would perform Gamma Knife on a child. He agreed that Sara was a good candidate and July 2013 Gamma Knife was performed and was successful. To present date Sara continues to have follow-up MRIs every six months and praise the Lord the tumor remains inactive.
Thank you for reading.
Organizer
Bonnie Mccaslin
Organizer
Hayesville, NC