Edna Needs a New Heart
Donation protected
Edna needs a new heart. The 10 year old little girl, with the brightest smile and biggest heart, needs a new heart. These words simply do not feel real. Even writing them down now seems unnatural. The last few weeks have been akin to a nightmare. Our entire family keeps asking itself when it will wake up from what surely has to be some cruel dream. This new version of our reality, of her reality, has left us in shock.
Edna’s heart complications started almost three years ago in June 2014. On an early summer morning, then seven year old Edna woke up not feeling well. On her way to the bathroom she fell ill and fainted. Her mom, Elma, heard a loud thud and rushed in to find Edna unconscious on the floor. Soon after, Edna came to, dazed and confused. Her mom kept trying to talk to her to keep her alert until the ambulance arrived. It is hard to imagine the panic and horror Elma felt at that moment seeing her child in this state. Up to this point, Edna had never had an episode like that. She had been a healthy, active little girl who loved music and being outdoors.
Edna was taken to a local hospital near her home, but the ER staff there quickly realized that Edna needed more specialized care. She was transferred to Ann & Robert H. Lurie Children’s Hospital of Chicago where she spent most of her summer in 2014. While there, the doctors discerned that Edna had an irregular heart beat, and that this contributed to her fainting. She was diagnosed with Cardiomyopathy and Arrhythmia.
Cardiomyopathy refers to a disease of the heart muscle. The heart muscle becomes enlarged, thick or rigid in cardiomyopathy, and in rare cases the muscle tissue is replaced with scar tissue. As the condition worsens, the heart becomes weaker and less able to pump blood through the body and maintain a normal electrical rhythm. The result can be heart failure or irregular heartbeats called arrhythmia.
An arrhythmia is an abnormal heart rhythm that leads to many problems. The term “arrhythmia” refers to any change from the normal sequence of electrical impulses in the heart. The electrical impulses may happen too fast, too slowly, or erratically – causing the heart to beat too fast, too slowly, or erratically. When the heart doesn't beat properly, it can't pump blood effectively. When the heart doesn't pump blood effectively, the lungs, brain and all other organs can't work properly and may shut down or be damaged.
Edna, our sweet and grinning Edna, had Cardiomyopathy and Arrhythmia. We could not let that sink in without getting extremely emotional and fearful of what the future held for our niece. To treat these conditions, Edna was placed on a regiment of daily medications and underwent a surgical procedure whereby a pacemaker was placed in her chest to help control her abnormal heart rhythms. Pacemakers use low-energy electrical pulses to prompt the heart to beat at a normal rate and are used to treat arrhythmias.
Edna was released from the hospital in the Summer of 2014 and was improving greatly. She was back to her usual, cheerful self rather quickly. It seemed that the medicine and the pacemaker were doing their job at helping Edna lead a normal life. Intermittently, she had a few hospitalizations and procedures during the past couple years, but each time she was released we were met with positive news. Edna would still have to attend regular check ups, but things were looking up.
Unfortunately, everything took a turn for the worse earlier this year. Edna experienced numerous health issues and has been in and out of the hospital for much of the year. Recently, Edna was admitted to Lurie Children’s again on a more permanent basis. Much to our sheer disbelief, it was discovered that Edna’s condition could no longer be treated by medication and the pacemaker. This past Saturday, March 18, Edna fainted in the hospital while taking a shower. It turns out that Edna’s heart stopped beating entirely – thankfully, her pacemaker, and the great doctors and medical staff at Lurie Children’s were able to get it to beat again, but now extremely weakened.
Since then, we have found out that Edna’s condition has changed to heart failure. Her heart simply cannot support her body and organs much longer. She now needs a pediatric heart transplant, a new heart to replace her own which has fought so long and hard. On March 21, 2017 Edna underwent an emergency open heart surgery whereby a mechanical pump was implanted inside her chest to help her weakened heart pump blood to her organs. Edna is currently in recovery from that surgery. The mechanical pump is only a temporary solution while Edna waits for her new heart to become available. The doctors call it a “bridge” to transplant.
The pediatric heart transplant procedure is quite complex, and there is an extensive organ waiting list. Edna has to wait for a heart to become available, and one that will be a good match for her body and blood type. The recovery after surgery will bring many of its own complications. One of the most common problems after transplant surgery is rejection, meaning that the body doesn't recognize the new heart and doesn't know that it is helpful. As a result, the immune system tries to attack it. Medicines can help to control this reaction and in a sense trick the body into accepting the new organ.
Edna has a long road ahead of her, but we are hopeful that the transplant will give her the ability to lead a long and full life. I’ll never forget being beside her right as she was about to go in for surgery to supplant her pacemaker. I sat there in disbelief as this young child showed the kind of stoicism and bravery I have never seen an adult show. Edna has not ever become disheartened despite all of the hard experiences she has had to endure over the years. She takes it all in stride, she says she understands that these procedures have to be done and tells us it is “okay.” She is literally the strongest little human in the world. Our biggest hope for her is that she will recover and be able to live a normal life. She is just a kid and deserves to be able to laugh, run and jump again.
However, until Edna is able to get a donor’s heart, she will have to remain in the hospital. The most heartbreaking part of all of this is that Edna is such a happy and fun loving child. She loves being outside, playing with her friends and her puppy Benji. Unfortunately, being mostly bed ridden in the hospital means that Edna cannot enjoy many of the things she used to before her life changed so suddenly.
We hope that you can help Edna by donating to the Dizdarevic family. She is part of a one income, four person household. We do not know what the full cost of the heart transplant procedure and hospital admission will be, but according to the United Network for Organ Sharing, the average total cost for 2011 amounts close to $998,000. Luckily, Edna is insured. However, for the foreseeable future Edna’s parents, Elma and Adnan, will spend every waking minute beside Edna in the hospital, or tending to her older brother Enis. This leaves them with a heavy financial burden, and anything you can give to help them alleviate this burden will truly be appreciated. Moreover, Edna loves making friendship bracelets and she is really good at arts and crafts. Our goal is to use a portion of the proceeds to buy Edna gifts consisting of toys and activities that she can play with while in the hospital awaiting her transplant. Lastly, your contribution will go towards any out of pocket medical expenses the Dizdarevic family may encounter during Edna’s treatment.
Thank you again for all of your generous support.
Edna, a couple years ago before her life changed.
Edna, with her brother Enis.
Edna, the Flower Girl at our Wedding, May 2016.
Our Edna smiling big at the hospital last week, before her open heart surgery.
Edna’s heart complications started almost three years ago in June 2014. On an early summer morning, then seven year old Edna woke up not feeling well. On her way to the bathroom she fell ill and fainted. Her mom, Elma, heard a loud thud and rushed in to find Edna unconscious on the floor. Soon after, Edna came to, dazed and confused. Her mom kept trying to talk to her to keep her alert until the ambulance arrived. It is hard to imagine the panic and horror Elma felt at that moment seeing her child in this state. Up to this point, Edna had never had an episode like that. She had been a healthy, active little girl who loved music and being outdoors.
Edna was taken to a local hospital near her home, but the ER staff there quickly realized that Edna needed more specialized care. She was transferred to Ann & Robert H. Lurie Children’s Hospital of Chicago where she spent most of her summer in 2014. While there, the doctors discerned that Edna had an irregular heart beat, and that this contributed to her fainting. She was diagnosed with Cardiomyopathy and Arrhythmia.
Cardiomyopathy refers to a disease of the heart muscle. The heart muscle becomes enlarged, thick or rigid in cardiomyopathy, and in rare cases the muscle tissue is replaced with scar tissue. As the condition worsens, the heart becomes weaker and less able to pump blood through the body and maintain a normal electrical rhythm. The result can be heart failure or irregular heartbeats called arrhythmia.
An arrhythmia is an abnormal heart rhythm that leads to many problems. The term “arrhythmia” refers to any change from the normal sequence of electrical impulses in the heart. The electrical impulses may happen too fast, too slowly, or erratically – causing the heart to beat too fast, too slowly, or erratically. When the heart doesn't beat properly, it can't pump blood effectively. When the heart doesn't pump blood effectively, the lungs, brain and all other organs can't work properly and may shut down or be damaged.
Edna, our sweet and grinning Edna, had Cardiomyopathy and Arrhythmia. We could not let that sink in without getting extremely emotional and fearful of what the future held for our niece. To treat these conditions, Edna was placed on a regiment of daily medications and underwent a surgical procedure whereby a pacemaker was placed in her chest to help control her abnormal heart rhythms. Pacemakers use low-energy electrical pulses to prompt the heart to beat at a normal rate and are used to treat arrhythmias.
Edna was released from the hospital in the Summer of 2014 and was improving greatly. She was back to her usual, cheerful self rather quickly. It seemed that the medicine and the pacemaker were doing their job at helping Edna lead a normal life. Intermittently, she had a few hospitalizations and procedures during the past couple years, but each time she was released we were met with positive news. Edna would still have to attend regular check ups, but things were looking up.
Unfortunately, everything took a turn for the worse earlier this year. Edna experienced numerous health issues and has been in and out of the hospital for much of the year. Recently, Edna was admitted to Lurie Children’s again on a more permanent basis. Much to our sheer disbelief, it was discovered that Edna’s condition could no longer be treated by medication and the pacemaker. This past Saturday, March 18, Edna fainted in the hospital while taking a shower. It turns out that Edna’s heart stopped beating entirely – thankfully, her pacemaker, and the great doctors and medical staff at Lurie Children’s were able to get it to beat again, but now extremely weakened.
Since then, we have found out that Edna’s condition has changed to heart failure. Her heart simply cannot support her body and organs much longer. She now needs a pediatric heart transplant, a new heart to replace her own which has fought so long and hard. On March 21, 2017 Edna underwent an emergency open heart surgery whereby a mechanical pump was implanted inside her chest to help her weakened heart pump blood to her organs. Edna is currently in recovery from that surgery. The mechanical pump is only a temporary solution while Edna waits for her new heart to become available. The doctors call it a “bridge” to transplant.
The pediatric heart transplant procedure is quite complex, and there is an extensive organ waiting list. Edna has to wait for a heart to become available, and one that will be a good match for her body and blood type. The recovery after surgery will bring many of its own complications. One of the most common problems after transplant surgery is rejection, meaning that the body doesn't recognize the new heart and doesn't know that it is helpful. As a result, the immune system tries to attack it. Medicines can help to control this reaction and in a sense trick the body into accepting the new organ.
Edna has a long road ahead of her, but we are hopeful that the transplant will give her the ability to lead a long and full life. I’ll never forget being beside her right as she was about to go in for surgery to supplant her pacemaker. I sat there in disbelief as this young child showed the kind of stoicism and bravery I have never seen an adult show. Edna has not ever become disheartened despite all of the hard experiences she has had to endure over the years. She takes it all in stride, she says she understands that these procedures have to be done and tells us it is “okay.” She is literally the strongest little human in the world. Our biggest hope for her is that she will recover and be able to live a normal life. She is just a kid and deserves to be able to laugh, run and jump again.
However, until Edna is able to get a donor’s heart, she will have to remain in the hospital. The most heartbreaking part of all of this is that Edna is such a happy and fun loving child. She loves being outside, playing with her friends and her puppy Benji. Unfortunately, being mostly bed ridden in the hospital means that Edna cannot enjoy many of the things she used to before her life changed so suddenly.
We hope that you can help Edna by donating to the Dizdarevic family. She is part of a one income, four person household. We do not know what the full cost of the heart transplant procedure and hospital admission will be, but according to the United Network for Organ Sharing, the average total cost for 2011 amounts close to $998,000. Luckily, Edna is insured. However, for the foreseeable future Edna’s parents, Elma and Adnan, will spend every waking minute beside Edna in the hospital, or tending to her older brother Enis. This leaves them with a heavy financial burden, and anything you can give to help them alleviate this burden will truly be appreciated. Moreover, Edna loves making friendship bracelets and she is really good at arts and crafts. Our goal is to use a portion of the proceeds to buy Edna gifts consisting of toys and activities that she can play with while in the hospital awaiting her transplant. Lastly, your contribution will go towards any out of pocket medical expenses the Dizdarevic family may encounter during Edna’s treatment.
Thank you again for all of your generous support.
Edna, a couple years ago before her life changed.Edna, with her brother Enis.
Edna, the Flower Girl at our Wedding, May 2016.
Our Edna smiling big at the hospital last week, before her open heart surgery.
Organizer and beneficiary
Jasmina Hamulic Resic
Organizer
Chicago, IL
Elma Resic Dizdarevic
Beneficiary
