1967 Camero Wish
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We are in the process of rebuilding my adopted daughter’s father's SS 1967 Camero. The story below will help you understand the background of my adopted daughter and her struggle with HCM. This project is in conjunction with the Make A Wish organization who is committing resources but we are still in need of $12,000.00 to complete the project.
The 1967 SS Camero has 79,000 original miles. It was placed in a barn from 1973 after the car was in an accident. It sustained frontend damage and was in the barn until 1995. It was moved to a garage where my daughter’s father started to restore the car. He did a lot of work but died before be could finish the project. Until a few weeks ago the car had been outside in the daylight 2 times from 1973 to 2015. We spent several years in attempting to get several of the programs on the cable channels to restore the car as a tribute to HER father and to bring awareness to Hypertrophic Cardiomyopathy. We did get one response but were told the car was considered as the 17th car in a season of 16 cars to be restored.
Make A Wish is willing to cover certain costs but other costs are not covered to restore the car. We are asking Go Fund Me to assist so we can complete the restoration and tell my daughter heroic story.
THIS IS STILL A SECRET TO MY DAUGHTER
HERE IS HER STORY
At a 4 month well-baby check-up, the pediatrician heard a pronounced heart murmur not detected before. Within an hour, SHE and HER mother were at a pediatric cardiologists office with the diagnoses of hypertrophic cardiomyopathy, HCM. HER parents were stunned to learn that HCM is a predominately genetic disease. Neither parent was aware at the time that it was in either of their families. SHE was critically ill – a baby that was not easily consoled and only allowed HER mother, father and maternal grandmother to hold HER. Little did HER parents know at the time how very sick SHE was.
Hypertrophic Cardiomyopathy or HCM is the number one cause of sudden death for people under the age of 30. It causes a thickening of the septum wall restricting blood flow. Because the heart has to work harder to pump blood, it can easily go into an arrhythmia and lead to sudden death. Hank Gathers is one of the famous people who have died from HCM.
SHE developed roseola and every other type of pediatric ailment possible ending up in the hospital every time SHE got sick. Unfortunately, SHE was used as a “pin cushion” since the nurses and doctors could not find HER veins for a blood draw. It is mentioned now as this will be a recurring situation throughout HER story. We were told at one point that redheads have trouble with blood draws and SHE is a redhead. While we don’t know if this is true or not, it would appear to be our reality. She was poked so many times that SHE is visibly afraid of needles even at 17 years of age.
Once we had the diagnosis of HCM, SHE was seen 3-4 times a week for a weigh-in, echocardiogram and ekg. After a while, SHE became extremely frightened of any procedure and would hide or scream or both in order to avoid any treatment even with no pain involved. SHE was still a baby but learned quickly that SHE didn’t want any procedures or to be bothered in any way. This became an obstacle for HER doctors when trying to assess the heart situation.
Just prior to her 9 month birthday, HER MOM, was told that SHE needed open heart surgery. While stunned, HER MOM spoke with the pediatric surgeon who informed her that SHE would not be alive past her 1 year birthday without the surgery. We later learned that HER surgeon is the one who performs heart surgery on the most at-risk and severe pediatric surgeries throughout the state. HER parents had no idea at the time who HER surgeon was – the best of the best.
Only 10% of open heart patients end up with pericarditis – an infection around the heart. SHE was in that 10%, BOTH SHE and HER mom had a longer hospital stay due to this inflammation. After a little more than 2 weeks at UCSF, SHE and HER mom were able to return home. Unfortunately, the pericarditis was not fully resolved and we ended up back in the hospital in Sacramento one day after returning home from San Francisco. After some very stressful discussions between surgeons/doctors/staff it was determined that SHE should have an IV of steroids. Thankfully that seemed to resolve the problem and we were able to leave the hospital earlier than originally anticipated (2-3 days).
Once back from the hospital, SHE had to endure regular cardiology appointments. It was amazing to see how much SHE responded to the relief the heart surgery provided. However, SHE still had regular appointments for the future: several times a week to twice a week to once a week to once every other week to once a month. SHE was tired of being prodded and checked so every appointment was a difficult one with HER screaming and throwing a fit. The appointments weren’t painful but SHE didn’t want to be poked or bothered any longer. Her mother tried every type of avoidance possible like when SHE had to have a heart halter monitor and her mom devised one for HER doll so SHE could focus on her doll instead of herself, etc. There are numerous examples of what happened in order to provide avoidance for HER.
SHE was doing relatively well for a while. There were times when SHE had chest pains and light headedness and MOM would rush home from WORK to get her to the hospital at a moments notice. HER teachers knew what to look for and her, mom worked with them closely as HER condition was volatile. MOM was called at least once a month for several years. However, it was when SHE was 8 years old – her father died from HCM. He wasn’t diagnosed until much later in his life and ultimately succumbed to the same heart disease that his daughter had. Months and months would pass by after his death with HER complaining of chest pains, light headedness, headaches, etc. Her symptoms seemed to magnify after her father’s death.
I mentioned briefly above that HCM is genetic. It is rampant in HER father’s family with several family members dying from HCM. SHE has had HER genetic profile done and the gene for HCM was identified allowing others in her family to ultimately know if they have the same gene of not.
HER mom, was receiving weekly calls from HER school that SHE was light headed, had chest pains, didn’t feel well, etc. Ultimately, it was determined that SHE qualified for an implantable cardio-defibrillator (ICD) since she was experiencing may of the risk factors that would lead to sudden death and the need for the device. And SHE had a number of family members who had succumbed to sudden death from HCM in HER father’s family.
When Anna was 10 years old HER mother had REMARRIED and under went surgery to implant the ICD. The ICD is located inside her upper left shoulder and has two electronic leads that penetrate near but not into the atrial and ventricular regions of her heart.
Two weeks after her surgery on an outing to for a father’s day breakfast, SHE experienced extreme chest pain, turned ashened pale, slumped into the restaurant seat and was taken to the hospital where she was stabilized. Anna was then rushed to Stanford Children’s Hospital.
After a day of tests and observations by the staff we learned one of the leads from the ICD had pierced her heart and Anna was at risk of dying. The ICD team of Doctors had never seen this happen before. In order to save Anna’s life several teams of cardiac surgeons had to be assembled quickly to save. Anna was prepped for open heart surgery since no one on the operating team knew how severe the situation was going to be. During the prep period Anna’s conditioned worsened. Expressing concern to the anesthesiologist “Jumbo” her adopted father insisted they act. Jumbo agreed, took control of the entire procedure and rushed HER into surgery ‘ready or not’ the surgeons had to act. Act they did, after several hours of surgery the ICD and the offending leads were removed with no after effects.
SHE returned to Stanford Children’s Hospital six months later to have the ICD replaced. All went well. Unfortunately, the ICD incision was irritated and while asleep, SHE scratched it. SHE ended up with an infection in her scar that could lead to a transfer of the infection from the scar to her heart leading to death. Back to Stanford we went. SHE had to have a pic-line in her neck so that enough antibiotics would be released to prevent the spread of any infection to her heart. The infection ultimately subsided and SHE was able to be released from the hospital and go home.
Anna’s heart has been relatively stable for some time even with the awareness that symptoms can happen at any time. SHE undergoes regular check-ups for her ICD and her HCM. SHE has learned the hard way that SHE cannot keep up with her friends in a variety of circumstances. SHE attended a Giants baseball game and tried to run up the stairs to HER seat instead of taking the elevator. Unfortunately, SHE collapsed once SHE reached HER seat since it was so far up.
There is no cure for HCM but knowing you have the disease can save lives. SHE continues to do pretty well, gets checked regularly, and maintains constant awareness of how she feels. SHE has an ICD check-up every 3 months and has a cardiologist visit twice a year. There are more Dr. visits if needed but the concern of sudden death due to HCM is very real with HER .
OUR DAUGHTER is an inspiration and a real hero to those who know her. HER story is one of courage and as HER motto states: Live every moment, Love beyond words, Laugh every day.
The 1967 SS Camero has 79,000 original miles. It was placed in a barn from 1973 after the car was in an accident. It sustained frontend damage and was in the barn until 1995. It was moved to a garage where my daughter’s father started to restore the car. He did a lot of work but died before be could finish the project. Until a few weeks ago the car had been outside in the daylight 2 times from 1973 to 2015. We spent several years in attempting to get several of the programs on the cable channels to restore the car as a tribute to HER father and to bring awareness to Hypertrophic Cardiomyopathy. We did get one response but were told the car was considered as the 17th car in a season of 16 cars to be restored.
Make A Wish is willing to cover certain costs but other costs are not covered to restore the car. We are asking Go Fund Me to assist so we can complete the restoration and tell my daughter heroic story.
THIS IS STILL A SECRET TO MY DAUGHTER
HERE IS HER STORY
At a 4 month well-baby check-up, the pediatrician heard a pronounced heart murmur not detected before. Within an hour, SHE and HER mother were at a pediatric cardiologists office with the diagnoses of hypertrophic cardiomyopathy, HCM. HER parents were stunned to learn that HCM is a predominately genetic disease. Neither parent was aware at the time that it was in either of their families. SHE was critically ill – a baby that was not easily consoled and only allowed HER mother, father and maternal grandmother to hold HER. Little did HER parents know at the time how very sick SHE was.
Hypertrophic Cardiomyopathy or HCM is the number one cause of sudden death for people under the age of 30. It causes a thickening of the septum wall restricting blood flow. Because the heart has to work harder to pump blood, it can easily go into an arrhythmia and lead to sudden death. Hank Gathers is one of the famous people who have died from HCM.
SHE developed roseola and every other type of pediatric ailment possible ending up in the hospital every time SHE got sick. Unfortunately, SHE was used as a “pin cushion” since the nurses and doctors could not find HER veins for a blood draw. It is mentioned now as this will be a recurring situation throughout HER story. We were told at one point that redheads have trouble with blood draws and SHE is a redhead. While we don’t know if this is true or not, it would appear to be our reality. She was poked so many times that SHE is visibly afraid of needles even at 17 years of age.
Once we had the diagnosis of HCM, SHE was seen 3-4 times a week for a weigh-in, echocardiogram and ekg. After a while, SHE became extremely frightened of any procedure and would hide or scream or both in order to avoid any treatment even with no pain involved. SHE was still a baby but learned quickly that SHE didn’t want any procedures or to be bothered in any way. This became an obstacle for HER doctors when trying to assess the heart situation.
Just prior to her 9 month birthday, HER MOM, was told that SHE needed open heart surgery. While stunned, HER MOM spoke with the pediatric surgeon who informed her that SHE would not be alive past her 1 year birthday without the surgery. We later learned that HER surgeon is the one who performs heart surgery on the most at-risk and severe pediatric surgeries throughout the state. HER parents had no idea at the time who HER surgeon was – the best of the best.
Only 10% of open heart patients end up with pericarditis – an infection around the heart. SHE was in that 10%, BOTH SHE and HER mom had a longer hospital stay due to this inflammation. After a little more than 2 weeks at UCSF, SHE and HER mom were able to return home. Unfortunately, the pericarditis was not fully resolved and we ended up back in the hospital in Sacramento one day after returning home from San Francisco. After some very stressful discussions between surgeons/doctors/staff it was determined that SHE should have an IV of steroids. Thankfully that seemed to resolve the problem and we were able to leave the hospital earlier than originally anticipated (2-3 days).
Once back from the hospital, SHE had to endure regular cardiology appointments. It was amazing to see how much SHE responded to the relief the heart surgery provided. However, SHE still had regular appointments for the future: several times a week to twice a week to once a week to once every other week to once a month. SHE was tired of being prodded and checked so every appointment was a difficult one with HER screaming and throwing a fit. The appointments weren’t painful but SHE didn’t want to be poked or bothered any longer. Her mother tried every type of avoidance possible like when SHE had to have a heart halter monitor and her mom devised one for HER doll so SHE could focus on her doll instead of herself, etc. There are numerous examples of what happened in order to provide avoidance for HER.
SHE was doing relatively well for a while. There were times when SHE had chest pains and light headedness and MOM would rush home from WORK to get her to the hospital at a moments notice. HER teachers knew what to look for and her, mom worked with them closely as HER condition was volatile. MOM was called at least once a month for several years. However, it was when SHE was 8 years old – her father died from HCM. He wasn’t diagnosed until much later in his life and ultimately succumbed to the same heart disease that his daughter had. Months and months would pass by after his death with HER complaining of chest pains, light headedness, headaches, etc. Her symptoms seemed to magnify after her father’s death.
I mentioned briefly above that HCM is genetic. It is rampant in HER father’s family with several family members dying from HCM. SHE has had HER genetic profile done and the gene for HCM was identified allowing others in her family to ultimately know if they have the same gene of not.
HER mom, was receiving weekly calls from HER school that SHE was light headed, had chest pains, didn’t feel well, etc. Ultimately, it was determined that SHE qualified for an implantable cardio-defibrillator (ICD) since she was experiencing may of the risk factors that would lead to sudden death and the need for the device. And SHE had a number of family members who had succumbed to sudden death from HCM in HER father’s family.
When Anna was 10 years old HER mother had REMARRIED and under went surgery to implant the ICD. The ICD is located inside her upper left shoulder and has two electronic leads that penetrate near but not into the atrial and ventricular regions of her heart.
Two weeks after her surgery on an outing to for a father’s day breakfast, SHE experienced extreme chest pain, turned ashened pale, slumped into the restaurant seat and was taken to the hospital where she was stabilized. Anna was then rushed to Stanford Children’s Hospital.
After a day of tests and observations by the staff we learned one of the leads from the ICD had pierced her heart and Anna was at risk of dying. The ICD team of Doctors had never seen this happen before. In order to save Anna’s life several teams of cardiac surgeons had to be assembled quickly to save. Anna was prepped for open heart surgery since no one on the operating team knew how severe the situation was going to be. During the prep period Anna’s conditioned worsened. Expressing concern to the anesthesiologist “Jumbo” her adopted father insisted they act. Jumbo agreed, took control of the entire procedure and rushed HER into surgery ‘ready or not’ the surgeons had to act. Act they did, after several hours of surgery the ICD and the offending leads were removed with no after effects.
SHE returned to Stanford Children’s Hospital six months later to have the ICD replaced. All went well. Unfortunately, the ICD incision was irritated and while asleep, SHE scratched it. SHE ended up with an infection in her scar that could lead to a transfer of the infection from the scar to her heart leading to death. Back to Stanford we went. SHE had to have a pic-line in her neck so that enough antibiotics would be released to prevent the spread of any infection to her heart. The infection ultimately subsided and SHE was able to be released from the hospital and go home.
Anna’s heart has been relatively stable for some time even with the awareness that symptoms can happen at any time. SHE undergoes regular check-ups for her ICD and her HCM. SHE has learned the hard way that SHE cannot keep up with her friends in a variety of circumstances. SHE attended a Giants baseball game and tried to run up the stairs to HER seat instead of taking the elevator. Unfortunately, SHE collapsed once SHE reached HER seat since it was so far up.
There is no cure for HCM but knowing you have the disease can save lives. SHE continues to do pretty well, gets checked regularly, and maintains constant awareness of how she feels. SHE has an ICD check-up every 3 months and has a cardiologist visit twice a year. There are more Dr. visits if needed but the concern of sudden death due to HCM is very real with HER .
OUR DAUGHTER is an inspiration and a real hero to those who know her. HER story is one of courage and as HER motto states: Live every moment, Love beyond words, Laugh every day.
Organizer
Paul Preston
Organizer
Yuba City, CA
