Bonnie Kawell's Heart Reconstruction Fund
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Bonnie's Heart Journey
What is Marfan syndrome?
Marfan syndrome is a connective tissue disorder. It is a chronic syndrome that affects the heart, blood vessels, bones, joints and eyes.
Bonnie's Story
My mom was diagnosed with Marfan syndrome at the age of 16. She has had numerous surgeries on her eyes, as well as her heart due to a thoracic aortic aneurysm. The aneurysm can dissect & be fatal, as it was so in my moms oldest daughter and my sister, Danielle Escarcega's case on February 13, 2010. My mom is a tough cookie whose been through so much trauma, but still finds a way to be a good wife, sister, aunt, friend, and Grandma to so many that love and adore her.
During the summer of 2019, she found out that the aortic aneurysm had grown and that she needed to get a cuff put on it as soon as possible to prevent it from enlarging. In August, she went through the surgery with her doctor at Mayo Clinic in Phoenix. It was pretty quickly after that surgery that she started getting terrible persistent back pain. My dad would take her back to the ER just about every weekend, where they didn't really have a solution for her back pain. Last September, she woke up and not only did she have this back pain but she also had this deep achey feeling in her chest, and could almost feel like a 'whoosh' going on, and so she knew that she needed to get to the hospital as soon as possible. The achey feeling turned out to be that this aneurysm was starting to dissect. It was terrifying, as we all knew this was how Danielle had passed away and we did not want to lose our mom. Her doctor again went in, and put in another cuff. Her doctor explained to us that he is hoping that this should fix things, and help with her back pain. He also noted that if this surgery is unsuccessful that she will need to be sent out of state for a heart reconstruction surgery. Things were going okay during recovery, and her back pain wasn't as intense and we all had a sigh of relief. Last Sunday, November 3rd she noticed she starting getting the achey feeling again. We were all hoping it was nothing, but once the feeling started getting worse instead of better she decided to err on the side of caution and went back into the ER at Mayo Clinic. Upon numerous tests, they found out that once again her aneurysm was starting to dissect and this time it appeared to be dissecting in the same fatal spot where Danielle's had done so. Her doctor stalled the surgery, because he felt that he is not fully confident as the Mayo Clinic in Phoenix does not ever do this type of Heart Reconstructive surgery.
What happens next?
We found out that her doctor wanted to send her to Houston, where they have a team of Doctors whom are specialists in aortic aneurysms, as well as Marfan syndrome whom have performed this Reconstructive surgery successfully. We are all elated to hear this news, as there seems to be a light at the end of the tunnel. Since this is a life or death situation, Bonnie needs to be medically air transported to Houston. At first her doctor was hesitant to release her, as he was concerned that her insurance Medicare will not pay for the medical air flight and he knows this transport is very expensive. Her ICU Nurses and Doctors, my sister (Tiffany), my dad, and various other specialists all advocate together to her doctor that this is a dire situation and she needs to be medically air transported. He ultimately decides that yes, he will approve the transport but we are soon to find out that we will need to pay an upfront out of pocket charge of $20,000 for the medical flight that may or may not be reimbursed by Medicare.
How can you help?
We would appreciate any monetary donation at this time. The money donated will assist in Lodging, Transportation, Food, and any other medical costs that may arise during this undetermined time frame while my mom undergoes surgery and recovery in Houston.
Thank you from the bottom of our hearts for your generous donation! We appreciate it so much, and it means the world to all of us that you would be willing to help out. If you are unable to help out monetarily, please share this GoFundMe page or be sending your prayers, love & light to Bonnie's way!
Bonnie with her daughters, Tiffany & Erica, and Granddaughter Kylie
Bonnie, and Wayne in May 2019 with their Granddaughter Avery, and Grandson Sloan
Bonnie before her last cuff surgery on September 30th, 2019
Bonnie's Granddaughter Avery drew a picture of her Grandma as "Iron Grandma". Nickname her and her brother Sloan have since given their Grandma since she will have a Reconstructed Heart soon.
Picture of an Enlarged Aorta vs. a Normal Aorta. Bonnie has an enlarged aorta due to her Marfan syndrome, hence why she is prone to aneurysms.
"An aortic aneurysm occurs when a weak spot in the wall of your aorta begins to bulge (left). This can occur anywhere in your aorta. Having an aneurysm increases the risk of a tear in the lining of the aorta, shown in the image on the right." As shown in the diagram below.
What is Marfan syndrome?
Marfan syndrome is a connective tissue disorder. It is a chronic syndrome that affects the heart, blood vessels, bones, joints and eyes.
Bonnie's Story
My mom was diagnosed with Marfan syndrome at the age of 16. She has had numerous surgeries on her eyes, as well as her heart due to a thoracic aortic aneurysm. The aneurysm can dissect & be fatal, as it was so in my moms oldest daughter and my sister, Danielle Escarcega's case on February 13, 2010. My mom is a tough cookie whose been through so much trauma, but still finds a way to be a good wife, sister, aunt, friend, and Grandma to so many that love and adore her.
During the summer of 2019, she found out that the aortic aneurysm had grown and that she needed to get a cuff put on it as soon as possible to prevent it from enlarging. In August, she went through the surgery with her doctor at Mayo Clinic in Phoenix. It was pretty quickly after that surgery that she started getting terrible persistent back pain. My dad would take her back to the ER just about every weekend, where they didn't really have a solution for her back pain. Last September, she woke up and not only did she have this back pain but she also had this deep achey feeling in her chest, and could almost feel like a 'whoosh' going on, and so she knew that she needed to get to the hospital as soon as possible. The achey feeling turned out to be that this aneurysm was starting to dissect. It was terrifying, as we all knew this was how Danielle had passed away and we did not want to lose our mom. Her doctor again went in, and put in another cuff. Her doctor explained to us that he is hoping that this should fix things, and help with her back pain. He also noted that if this surgery is unsuccessful that she will need to be sent out of state for a heart reconstruction surgery. Things were going okay during recovery, and her back pain wasn't as intense and we all had a sigh of relief. Last Sunday, November 3rd she noticed she starting getting the achey feeling again. We were all hoping it was nothing, but once the feeling started getting worse instead of better she decided to err on the side of caution and went back into the ER at Mayo Clinic. Upon numerous tests, they found out that once again her aneurysm was starting to dissect and this time it appeared to be dissecting in the same fatal spot where Danielle's had done so. Her doctor stalled the surgery, because he felt that he is not fully confident as the Mayo Clinic in Phoenix does not ever do this type of Heart Reconstructive surgery.
What happens next?
We found out that her doctor wanted to send her to Houston, where they have a team of Doctors whom are specialists in aortic aneurysms, as well as Marfan syndrome whom have performed this Reconstructive surgery successfully. We are all elated to hear this news, as there seems to be a light at the end of the tunnel. Since this is a life or death situation, Bonnie needs to be medically air transported to Houston. At first her doctor was hesitant to release her, as he was concerned that her insurance Medicare will not pay for the medical air flight and he knows this transport is very expensive. Her ICU Nurses and Doctors, my sister (Tiffany), my dad, and various other specialists all advocate together to her doctor that this is a dire situation and she needs to be medically air transported. He ultimately decides that yes, he will approve the transport but we are soon to find out that we will need to pay an upfront out of pocket charge of $20,000 for the medical flight that may or may not be reimbursed by Medicare.
How can you help?
We would appreciate any monetary donation at this time. The money donated will assist in Lodging, Transportation, Food, and any other medical costs that may arise during this undetermined time frame while my mom undergoes surgery and recovery in Houston.
Thank you from the bottom of our hearts for your generous donation! We appreciate it so much, and it means the world to all of us that you would be willing to help out. If you are unable to help out monetarily, please share this GoFundMe page or be sending your prayers, love & light to Bonnie's way!
Bonnie with her daughters, Tiffany & Erica, and Granddaughter Kylie
Bonnie, and Wayne in May 2019 with their Granddaughter Avery, and Grandson Sloan
Bonnie before her last cuff surgery on September 30th, 2019
Bonnie's Granddaughter Avery drew a picture of her Grandma as "Iron Grandma". Nickname her and her brother Sloan have since given their Grandma since she will have a Reconstructed Heart soon.
Picture of an Enlarged Aorta vs. a Normal Aorta. Bonnie has an enlarged aorta due to her Marfan syndrome, hence why she is prone to aneurysms.
"An aortic aneurysm occurs when a weak spot in the wall of your aorta begins to bulge (left). This can occur anywhere in your aorta. Having an aneurysm increases the risk of a tear in the lining of the aorta, shown in the image on the right." As shown in the diagram below.
Co-organizers (3)
Erica Barnes
Organizer
Litchfield Park, AZ
Bonnie Kawell
Beneficiary
Tiffany Gaboriault
Co-organizer
Zach Barnes
Co-organizer