Liora's Life Saving AVM Surgeries
Donation protected
My granddaughter Liora Malecki is a 16 year old girl who since birth has suffered a rare, disfiguring, life threatening nasal arterio-venous malformation. Liora's AVM is located in her nose, and crosses her optic nerve, with the root of it deep in her brain. Since 2004 she had 30 different surgeries and procedures to help her, but AVMs continue to grow and get worse and until a cure is found she will need surgeries ongoing for her whole life. She now needs another major operation to save her life, stop the bleeding and rebuild her nose. This will be the most involved surgery she has had to date. She and her family will have to travel many miles from her home to get this care. Liora's parents, Matt and Audrey, both work, but now they are tapped out. Even with health insurance they are going to need an additional money that they don't have to cover copays, travel, food and lodging, to get Liora to New York for the surgeries and care that she needs. Dr. Waner did a flap repair to Liora's nose to replace the dead tissue and restore circulation in 2016. This was partially successful. Liora will have excision of the nasal dorsal AVM and pulse laser, pulse dye laser and flap repair in NYC with Dr. Waner on August 8, 2019. This will be her third surgery of 2019, and 6th since March of 2018. Liora lives in Florida, and most of her surgeries are in New York. After the surgery in September 2016 part of the flap repair rejected, she developed an infection, and she had an area that was open and unsightly, with a continued risk of infection and risk of further loss of tissue. She has had more surgery to repair this and has received a chemotherapy drug called Bleomycin. On August 8, 2019 Dr. Waner will remove as much of the AVM as possible. He hopes this will stop the nosebleeds that she has that have caused her to need blood transfusions and give her a more normal appearance.
In late November 2016, when Liora had her last nasal debulking with Dr. Waner, and he nasal reconstruction from the skin on her cheek She and her mother had to remain in NYC for a month.
Liora has had sudden spontaneous nose bleeds all her life. She has had 14 embolization surgeries and 11 laser treatments. She has had two nasal debulking surgeries with Dr. Waner since 2009.
Liora loves to act and has been in plays at her school every year until 2015. She won the Noetic award for math in the State of Florida when she was in 4th grade. Due to bleeding and disfigurement from the necrosis (tissue death) that has developed on her nose, she began home schooling in 2015. After several surgeries and laser treatment, she was stable and able to enter High School in 2017, but due to missed school for surgeries, sinus infections and bleeding, she still requires tutoring and has been in summer school this summer and has private tutors, as well.
Liora has no friends at school. She eats lunch by herself, she went to Homecoming by herself and danced and sat alone last year. She has never caved to the stares, the insults, the name calling and the bullying. But now more than ever, while she does not necessarily look forward to more painful surgery, she does look forward to having a more normal appearing face and no more nose bleeds so she can graduate from High School in 2021. Please help her. Her condition is life threatening. If you google AVMs or visit Dr. Milton Waner and Dr. Alejandro Berenstein's Vascular Birthmark Institute you can learn about the seriousness of this condition and how it impacts a young child's quality of life. Dr. Waner does not take insurance. Lenox Hill Hospital requires a promisory note before the surgery will occur, and a down payment of $7,000.00 dollars. Consider how often this young girl has needed surgery. Please help her. Please donate if you can, and please share.
In late November 2016, when Liora had her last nasal debulking with Dr. Waner, and he nasal reconstruction from the skin on her cheek She and her mother had to remain in NYC for a month.
Liora has had sudden spontaneous nose bleeds all her life. She has had 14 embolization surgeries and 11 laser treatments. She has had two nasal debulking surgeries with Dr. Waner since 2009.
Liora loves to act and has been in plays at her school every year until 2015. She won the Noetic award for math in the State of Florida when she was in 4th grade. Due to bleeding and disfigurement from the necrosis (tissue death) that has developed on her nose, she began home schooling in 2015. After several surgeries and laser treatment, she was stable and able to enter High School in 2017, but due to missed school for surgeries, sinus infections and bleeding, she still requires tutoring and has been in summer school this summer and has private tutors, as well.
Liora has no friends at school. She eats lunch by herself, she went to Homecoming by herself and danced and sat alone last year. She has never caved to the stares, the insults, the name calling and the bullying. But now more than ever, while she does not necessarily look forward to more painful surgery, she does look forward to having a more normal appearing face and no more nose bleeds so she can graduate from High School in 2021. Please help her. Her condition is life threatening. If you google AVMs or visit Dr. Milton Waner and Dr. Alejandro Berenstein's Vascular Birthmark Institute you can learn about the seriousness of this condition and how it impacts a young child's quality of life. Dr. Waner does not take insurance. Lenox Hill Hospital requires a promisory note before the surgery will occur, and a down payment of $7,000.00 dollars. Consider how often this young girl has needed surgery. Please help her. Please donate if you can, and please share.
Organizer and beneficiary
Kathryn Angove
Organizer
Clawson, MI
Audrey Malecki
Beneficiary
