Dan's Broken Heart & Eliza's CTNNB1
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This is the story of Dan Daly and his daughter, Eliza. It is a long one, but well worth the read. They are a family in need of much emotional and financial support to help deal with the costs associated with their severe medical situations.
In June of 2014, Dan went to his doctor with a bad, lingering cough. After much testing and many visits to specialists in Chicago and Cleveland, he was diagnosed with heart failure. The doctors told him that they believed that, at some point in time, he had a virus that attacked his heart. The virus left his body but an imprint remained on his heart, causing it to behave as if the virus was still there. His heart continued to work overtime to rid itself of this viral imprint. Because of this, the doctors believe Dan's heart became weaker and weaker, resulting in the heart failure with which he is now dealing. Also because of this virus, the doctors believe Dan has suffered multiple silent heart attacks.
Shortly after his diagnosis, Dan had several procedures done. Eventually the doctors implanted a defibrillator and pacemaker to attempt to regulate and even out the rhythm of each side of Dan's heart. Although his ejection fraction (the strength at which his heart beats) has improved some, his heart continues to be in distress. In addition, because of his heart condition, Dan is now diabetic. He continues to feel exhausted and struggles with general malaise. He deals with heart palpitations on a regular basis and cannot do many of the everyday activities that he has always enjoyed. It is difficult for Dan to play with or pick up his young children, Liam and Eliza.
Unfortunately, Dan's heart condition will not go away; it is something he will have to deal with for the rest of his life. He may, eventually, be eligible for a heart transplant. But, as most are aware, that would be a last resort and only available to him once he goes into complete heart failure.
As all of this was occurring in Dan's life, he and his wife, Ann, were struggling with the fact that they have a daughter with disabilities. Again, after many, many tests, specialists, surgeries, and procedures, Dan and Ann found out their daughter, Eliza, now 2 years old, has a rare genetic disorder, CTNNB1 syndrome. There are only approximately 20 individuals in the whole world who have been diagnosed with this syndrome. While very little is known about CTNNB1, physical and mental delays and deficiencies seem to be common with this syndrome. Eliza, herself, has encountered severe developmental delays. As a result, she has weekly sessions with seven different therapists and still has regular visits with her specialists. Eliza walks with the aid of foot braces and a walker. She will continue to need specialized equipment, which can be very costly. Eliza is making tremendous progress but it will be a lifelong emotional, physical, and financial commitment for herself, her parents, and their family.
After several years of part-time and full-time college classes, Dan realized his dream and received his degree and certificate as a Special Education teacher. His is an amazing person and an amazing teacher. He currently teaches in the Chicago Public School system, and prides himself on being able to reach and work with his students who have physical, mental and emotional needs. Dan figured he would have many years to pay off his college debt and simply accepted that as a fact of life, not anticipating the additional expensive medical issues and associated costs for him and his daughter.
Dan continues to teach whenever he is not in the hospital or at various doctor’s appointments or procedures. He has talked about the possibility of going on long-term disability, but quite simply, between his and Eliza’s medical bills and his student loan debt, he could never afford to do so. So, he continues to go to work each and every day that he can, in spite of the fact that his heart condition drains and exhausts him.
Today, we are reaching out to our friends, family, and beyond for help. Dan, Ann, Liam, and Eliza have encountered challenges and costs that most of us could never imagine. Please open your hearts for this amazing family. Any amount you can contribute would be greatly appreciated. If you are unable to contribute financially, we ask that you keep them in your thoughts and prayers.
In June of 2014, Dan went to his doctor with a bad, lingering cough. After much testing and many visits to specialists in Chicago and Cleveland, he was diagnosed with heart failure. The doctors told him that they believed that, at some point in time, he had a virus that attacked his heart. The virus left his body but an imprint remained on his heart, causing it to behave as if the virus was still there. His heart continued to work overtime to rid itself of this viral imprint. Because of this, the doctors believe Dan's heart became weaker and weaker, resulting in the heart failure with which he is now dealing. Also because of this virus, the doctors believe Dan has suffered multiple silent heart attacks.
Shortly after his diagnosis, Dan had several procedures done. Eventually the doctors implanted a defibrillator and pacemaker to attempt to regulate and even out the rhythm of each side of Dan's heart. Although his ejection fraction (the strength at which his heart beats) has improved some, his heart continues to be in distress. In addition, because of his heart condition, Dan is now diabetic. He continues to feel exhausted and struggles with general malaise. He deals with heart palpitations on a regular basis and cannot do many of the everyday activities that he has always enjoyed. It is difficult for Dan to play with or pick up his young children, Liam and Eliza.
Unfortunately, Dan's heart condition will not go away; it is something he will have to deal with for the rest of his life. He may, eventually, be eligible for a heart transplant. But, as most are aware, that would be a last resort and only available to him once he goes into complete heart failure.
As all of this was occurring in Dan's life, he and his wife, Ann, were struggling with the fact that they have a daughter with disabilities. Again, after many, many tests, specialists, surgeries, and procedures, Dan and Ann found out their daughter, Eliza, now 2 years old, has a rare genetic disorder, CTNNB1 syndrome. There are only approximately 20 individuals in the whole world who have been diagnosed with this syndrome. While very little is known about CTNNB1, physical and mental delays and deficiencies seem to be common with this syndrome. Eliza, herself, has encountered severe developmental delays. As a result, she has weekly sessions with seven different therapists and still has regular visits with her specialists. Eliza walks with the aid of foot braces and a walker. She will continue to need specialized equipment, which can be very costly. Eliza is making tremendous progress but it will be a lifelong emotional, physical, and financial commitment for herself, her parents, and their family.
After several years of part-time and full-time college classes, Dan realized his dream and received his degree and certificate as a Special Education teacher. His is an amazing person and an amazing teacher. He currently teaches in the Chicago Public School system, and prides himself on being able to reach and work with his students who have physical, mental and emotional needs. Dan figured he would have many years to pay off his college debt and simply accepted that as a fact of life, not anticipating the additional expensive medical issues and associated costs for him and his daughter.
Dan continues to teach whenever he is not in the hospital or at various doctor’s appointments or procedures. He has talked about the possibility of going on long-term disability, but quite simply, between his and Eliza’s medical bills and his student loan debt, he could never afford to do so. So, he continues to go to work each and every day that he can, in spite of the fact that his heart condition drains and exhausts him.
Today, we are reaching out to our friends, family, and beyond for help. Dan, Ann, Liam, and Eliza have encountered challenges and costs that most of us could never imagine. Please open your hearts for this amazing family. Any amount you can contribute would be greatly appreciated. If you are unable to contribute financially, we ask that you keep them in your thoughts and prayers.
Organizer and beneficiary
Sarah Godzicki
Organizer
Villa Park, IL
Daniel Daly
Beneficiary