Donation protected
A great childhood friend I've known since Junior High School, Steve Kowalski, has been dealt a challenging unfair hand fighting multiple life altering, chronic & progressive health conditions. One is a disease called Coproporphyria - a rare genetic metabolic blood & liver disorder. In addition, Steve has POTS Syndrome, Chronic Venous Insufficiency, Peripheral Artery Disease & Peripheral Neuropathy. To complicate things further, Steve has Achilles Tendonitis, Gastroparesis & Chronic Sinusitis. Steve has many horrible symptoms that come with these horrible diseases and health conditions. Some of the worst are random episodes of loss of consciousness that occur daily & random non-epileptic seizures, that also can cause loss of feeling in his legs, which prevent Steve from being able to work since he is at a high risk for injury, and has already sustained many injuries. His primary care doctor will not release him for employment, and has informed Steve this is permanent. Steve is also not allowed to drive. In addition, flying in a plane has been deemed unsafe.
I'd like to note for all whom do not know Steve; prior to Steve's health decline he was a happily successful hard working guy living a normal healthy life. Even after Steve was first diagnosed he was determined to start a new profession that was less physical hoping his illness would not get in the way. With excitement & dedication Steve pursued a Master's Degree in Professional Mental Health Counseling inspired to want to help other people like him going through unfair life changing events. However, shortly after his education, Steve was placed in hospice for six months. With miracles & God's grace Steve has since left Hospice beating the odds, but his conditions continue to progress and disable him. Because Steve's conditions are chronic & very progressive, he continues to amass medical expenses, ambulance, hospital, testing & procedure expenses, along with other various medical expenses that never seem to stop.
Steve's sweet fiancé, Jamie, is Steve's primary care provider whom is employed full time as a preschool teacher & currently going to college to improve their future. Another challenge Steve & Jamie need help with is getting a better vehicle. Jamie & Steve's car is unfortunately very old & worn out. Honestly, not sure how much longer the car will last, as it's always needing service repairs that Steve and Jamie can't afford. More importantly, Steve & Jamie need a reliable vehicle to get Steve to the hospital when needed in emergency situations & to his many routine medical appointments. The mounds of medical bills & their old barely running car is a huge burden for this amazing couple. Steve & Jamie never seem to catch a break while the two of them do everything in their power to just manage all that they go through on a daily basis. Unfortunately, these immense challenges have overwhelmed them and they are in need of help. Our hopes are to raise funds that would provide relief of medical expense debt incurred, upcoming and continued medical related expenses, and a cost effective reliable vehicle free from unexpected repair costs.
So I ask all our friends and family to please help Steve and Jamie with a donation to help Steve keep fighting these horrible diseases, and health conditions, and for this sweet amazing couple to just catch a break for once giving them some new hope with lifting some financial burdens off their heavy shoulders. Every donation is so appreciated, as EVERY penny will help Steve & Jamie so much!! Please share this GoFundMe with your friends and family too to help Steve and Jamie reach this goal.
Sending a big thank you and hugs to all that help make a difference for Steve & Jamie...THANK YOU SO MUCH!! If you are interested in more detailed information about Steve's conditions, please see below "Optional Reading". Thank You again!!
OPTIONAL ONLY READING
The below information is provided for a couple reasons. One, it provides more detail about the couple’s circumstances. Two, Steve believes, if anyone reading this is ill, or is a caretaker, it may help them feel less alone. It is important for Steve to let others know that he can empathize with their challenges.
Diseases and Health Conditions
Coproporphyria: This is a genetic condition that people are born with, but he did not get diagnosed until he was 44 years old. A rare metabolic disorder. This is an acute porphyria of the liver. It is likely responsible for a large portion of his other conditions with the exception of genetic markers to hereditary hemochromatosis. Chronic and progressive.
POTS (Postural Orthostatic Tachycardia Syndrome): A form of dysautonomia, otherwise known as, impaired functioning of the autonomic nervous system. Chronic and progressive.
Chronic Venous Insufficiency: Veins in legs do not effectively return blood to heart which results in poor circulation. Chronic and progressive.
Peripheral Artery Disease: Narrowing of arteries in legs. Chronic and progressive.
Peripheral Neuropathy: Damaged nerves outside of the brain and spine, predominately in extremities. Chronic and progressive.
Achilles Tendonitis: Chronic inflammation of the Achilles tendons (both legs).
Gastroparesis: Delayed emptying of the stomach. Chronic.
Chronic Sinusitis: Inflammation in sinuses. Post-surgery symptoms indicate a remaining issue in the nasopharynx. In addition, there appears to be polypoid edema. More medical visits required. Chronic.
Combined Symptoms
Syncope (daily loss of consciousness, fainting), non-epileptic seizures, pain in the abdomen, nausea, chronic balance issues that lead to falls and injuries, numbness, tachycardia (consistent heartbeat of over 100), pain in extremities. temporary vision loss, temporary hearing loss, interruption of fine and gross motor skills, chronic fatigue syndrome, insomnia, intestinal inflammation, heart palpitations, dysphagia, difficulty breathing during sleep, sleep paralysis, swelling of the legs and ankles, pain in hips, cold lower extremities, food / environment / medication intolerances, various other acute symptoms.
Medical expenses
Frequent hospital visits and stays, ambulance transportation, frequent medical visits to various specialists, Uber to appointments when rides are unavailable, medications (that often change due to intolerances), natural supplements, medically required products (UV compression arm sleeves / replaced a couple times per year, medical grade compression stockings / replaced a couple times per year, insoles / orthotics / likely replaced 9-12 months, quality shoes that work well with orthotics and are professionally fit / replaced a couple times per year, Hurry-Cane / replaced every 6-9 months, socks that serve as compression for feet (belega), other products in acute instances), at home IV therapy, surgical tests and procedures (just had endoscopic sinus surgery, occasional endoscopic sinus exams, colonoscopies, endoscopies, annual autonomic evaluation testing, MRI, modified barium swallow testing, the list is endless, and will remain endless, as Steve's core conditions are chronic and progressive. In recent times, a medical intervention for Steve's Chronic Venous Insufficiency was put on hold. This was the result of debate between medical professionals, and lack of knowledge as to what surgical procedure is safest with Steve's Coproporphyria and POTS. The ETA on a surgery is undefined. At this time, more medical discovery, appointments, tests, and trials will need to be exhausted before committing to surgery. This will be an expensive path.
Due to daily sporadic syncope (loss of consciousness, fainting), and sporadic non-epileptic seizures, Steve is unable to work or operate a vehicle.
Steve's symptoms occur daily. This is the way he lives. However, even if it takes every ounce of energy that Steve has, he will find something to feel blessed about every single day with a big smile. Steve has been dealt an unfair hand, but he plays the cards he's been dealt the BEST he can with so much positivity, love of life and strength to keep going strong. Steve is a fighter and he won't give up. Steve is the nicest guy and even though he's suffering he will always be there for friends and family with an ear, heart and smiles. They say people whom have been through hard times, have a better understanding of other people who are struggling, and this is Steve. Steve is so friendly always talking to everyone he meets and always making others days brighter spreading his kindness everywhere he goes. It's Steve's turn to get some much needed financial help, as he used to help so many when he was able too...he shouldn't have to worry about the pile of medical expenses and not having a reliable car.
Fiancé
A little more about Jamie - She's a hard working preschool teacher. Doesn’t miss a beat. She works full time. She even plans for her classes when she’s not at work. She is a college student working very hard to add to her teaching skill set and improve their future. Jamie works on her college homework from the time she gets home from work, until she goes to bed, and every Saturday and Sunday. Not only does Jamie work full time, put a lot of hours in on her college studies, but she is Steve's non-stop caretaker. Jamie doesn’t get a break either. Sometimes Jamie is up all night helping Steve with his symptoms, crying over Steve as he lies on the floor unconscious or shaking, and often watching Steve being loaded into an ambulance, and she still doesn’t skip a beat with her job or college. In addition, Jamie looks at all the food she buys for their home, all the beverages, dish soap, laundry soap, body wash, you name it, to make sure that there is nothing in them that Steve has reacted to in the past. Jamie double checks Steve's prescriptions for the same reason. One time, Jamie caught an error, with a medication that landed Steve in the hospital for two nights once before. Even though Steve's conditions have permanently changed his life, Steve sometimes believes Jamie has it harder. People only see Steve, outside of his home, when Steve is not at his worst. Even though people may see Steve faint, or fall, it’s only the tip of the iceberg. When Steve's at his worst, his fiancé (and a select few), are the only ones who see Steve, outside of a hospital. The first time Steve's fiancé saw his symptoms out of control, it shook her to her core, but Jamie stayed anyways because she's amazing and loves Steve to pieces. Jamie can see the fear in Steve's eyes when his symptoms become the worst. Steve does his best to try to hide that, but Jamie sees through that. Those occurrences usually end in “okay I think it’s time to call 911”. Jamie then is the master of ceremonies when the paramedics arrive. Jamie provides them with a full history, medication safe list, and medications that are not safe. Jamie does this cool, calm, and collected, as tears roll down her face. SHE IS AMAZING!! Most people would be scared. Even medical staffs get caught off guard because they have very little experience with the combination of all Steve's symptoms. Steve's fiancé has often walked hospital staff through the best care measures. SHE IS INCREDIBLE.
Vehicle
Steve is unable to drive due to his conditions. As a result, Steve's fiancé is the one stuck with all the driving duties. They have one vehicle. It’s a 2005 Honda Civic. It served Jamie well. Then, it served both of them well. Steve and Jamie take great care of it, and show the car lots of love, but like any older car, it is just getting tired and worn out. It has become very difficult for Steve and Jamie to keep up with the repairs, as old parts wear out and fail. In addition, it has become difficult for Jamie to feel safe in the car for drives that are longer than a comfortable distance. Jamie takes the car to work and grocery shopping mainly. However, when there is a work need at a different location, she has to find a ride, or use Uber. This adds additional expenses with funds they don’t have. In addition, getting the car repaired, means again needing to find rides for her to and from work, not to mention funds. Finally, there have been times that they had to incur the expense of an ambulance for Steve, out of fear that the car was not reliable enough at the time to get to the hospital. Steve and Jamie are fortunate to have mechanics that are honest, caring, and often go out of their way to help, in ways that truly surprise and bless them often. However, recently, the mechanics told them that their car is just getting old and worn out, and there isn’t much one can do about that.
Feelings
Steve has always enjoyed helping others, when he was in a better position. Helping people was a very satisfying and happy experience. However, being on the other side of things, that results in Steve needing help, is not easy for him. No matter how hard Steve tries, he can’t change what is happening to him. Steve tries to manage all these horrible conditions. The problem is, Steve can’t stop these physical illnesses because there is no cure just treatments to manage his quality of life. All Steve can do, is remain positive, despite these physical symptoms. No matter how much Steve doesn't want to believe it, his conditions are chronic and progressive so Steve needs help. Steve's friend once said, “when you need help, and others want to help you, not allowing them to help you, is denying them the gift of helping”. When Steve was the helper, he remembers times, that he felt hurt that someone didn’t want his help. Steve wants people to know his story, but Steve and Jamie would never want anyone to feel obligated to help. If Steve's story moves someone to help, out of desire, then that is what would be a blessing. If Steve's story helps others, dealing with their own challenges, then he would consider that a blessing as well. Steve and Jamie both have the kindest and most giving hearts whom definitely do not deserve these challenges, but we can all make a difference for Jamie and Steve with alleviating some of their financial burdens by donating. Every penny will mean the world to this amazing couple. Thank you so much!!
I'd like to note for all whom do not know Steve; prior to Steve's health decline he was a happily successful hard working guy living a normal healthy life. Even after Steve was first diagnosed he was determined to start a new profession that was less physical hoping his illness would not get in the way. With excitement & dedication Steve pursued a Master's Degree in Professional Mental Health Counseling inspired to want to help other people like him going through unfair life changing events. However, shortly after his education, Steve was placed in hospice for six months. With miracles & God's grace Steve has since left Hospice beating the odds, but his conditions continue to progress and disable him. Because Steve's conditions are chronic & very progressive, he continues to amass medical expenses, ambulance, hospital, testing & procedure expenses, along with other various medical expenses that never seem to stop.
Steve's sweet fiancé, Jamie, is Steve's primary care provider whom is employed full time as a preschool teacher & currently going to college to improve their future. Another challenge Steve & Jamie need help with is getting a better vehicle. Jamie & Steve's car is unfortunately very old & worn out. Honestly, not sure how much longer the car will last, as it's always needing service repairs that Steve and Jamie can't afford. More importantly, Steve & Jamie need a reliable vehicle to get Steve to the hospital when needed in emergency situations & to his many routine medical appointments. The mounds of medical bills & their old barely running car is a huge burden for this amazing couple. Steve & Jamie never seem to catch a break while the two of them do everything in their power to just manage all that they go through on a daily basis. Unfortunately, these immense challenges have overwhelmed them and they are in need of help. Our hopes are to raise funds that would provide relief of medical expense debt incurred, upcoming and continued medical related expenses, and a cost effective reliable vehicle free from unexpected repair costs.
So I ask all our friends and family to please help Steve and Jamie with a donation to help Steve keep fighting these horrible diseases, and health conditions, and for this sweet amazing couple to just catch a break for once giving them some new hope with lifting some financial burdens off their heavy shoulders. Every donation is so appreciated, as EVERY penny will help Steve & Jamie so much!! Please share this GoFundMe with your friends and family too to help Steve and Jamie reach this goal.
Sending a big thank you and hugs to all that help make a difference for Steve & Jamie...THANK YOU SO MUCH!! If you are interested in more detailed information about Steve's conditions, please see below "Optional Reading". Thank You again!!
OPTIONAL ONLY READING
The below information is provided for a couple reasons. One, it provides more detail about the couple’s circumstances. Two, Steve believes, if anyone reading this is ill, or is a caretaker, it may help them feel less alone. It is important for Steve to let others know that he can empathize with their challenges.
Diseases and Health Conditions
Coproporphyria: This is a genetic condition that people are born with, but he did not get diagnosed until he was 44 years old. A rare metabolic disorder. This is an acute porphyria of the liver. It is likely responsible for a large portion of his other conditions with the exception of genetic markers to hereditary hemochromatosis. Chronic and progressive.
POTS (Postural Orthostatic Tachycardia Syndrome): A form of dysautonomia, otherwise known as, impaired functioning of the autonomic nervous system. Chronic and progressive.
Chronic Venous Insufficiency: Veins in legs do not effectively return blood to heart which results in poor circulation. Chronic and progressive.
Peripheral Artery Disease: Narrowing of arteries in legs. Chronic and progressive.
Peripheral Neuropathy: Damaged nerves outside of the brain and spine, predominately in extremities. Chronic and progressive.
Achilles Tendonitis: Chronic inflammation of the Achilles tendons (both legs).
Gastroparesis: Delayed emptying of the stomach. Chronic.
Chronic Sinusitis: Inflammation in sinuses. Post-surgery symptoms indicate a remaining issue in the nasopharynx. In addition, there appears to be polypoid edema. More medical visits required. Chronic.
Combined Symptoms
Syncope (daily loss of consciousness, fainting), non-epileptic seizures, pain in the abdomen, nausea, chronic balance issues that lead to falls and injuries, numbness, tachycardia (consistent heartbeat of over 100), pain in extremities. temporary vision loss, temporary hearing loss, interruption of fine and gross motor skills, chronic fatigue syndrome, insomnia, intestinal inflammation, heart palpitations, dysphagia, difficulty breathing during sleep, sleep paralysis, swelling of the legs and ankles, pain in hips, cold lower extremities, food / environment / medication intolerances, various other acute symptoms.
Medical expenses
Frequent hospital visits and stays, ambulance transportation, frequent medical visits to various specialists, Uber to appointments when rides are unavailable, medications (that often change due to intolerances), natural supplements, medically required products (UV compression arm sleeves / replaced a couple times per year, medical grade compression stockings / replaced a couple times per year, insoles / orthotics / likely replaced 9-12 months, quality shoes that work well with orthotics and are professionally fit / replaced a couple times per year, Hurry-Cane / replaced every 6-9 months, socks that serve as compression for feet (belega), other products in acute instances), at home IV therapy, surgical tests and procedures (just had endoscopic sinus surgery, occasional endoscopic sinus exams, colonoscopies, endoscopies, annual autonomic evaluation testing, MRI, modified barium swallow testing, the list is endless, and will remain endless, as Steve's core conditions are chronic and progressive. In recent times, a medical intervention for Steve's Chronic Venous Insufficiency was put on hold. This was the result of debate between medical professionals, and lack of knowledge as to what surgical procedure is safest with Steve's Coproporphyria and POTS. The ETA on a surgery is undefined. At this time, more medical discovery, appointments, tests, and trials will need to be exhausted before committing to surgery. This will be an expensive path.
Due to daily sporadic syncope (loss of consciousness, fainting), and sporadic non-epileptic seizures, Steve is unable to work or operate a vehicle.
Steve's symptoms occur daily. This is the way he lives. However, even if it takes every ounce of energy that Steve has, he will find something to feel blessed about every single day with a big smile. Steve has been dealt an unfair hand, but he plays the cards he's been dealt the BEST he can with so much positivity, love of life and strength to keep going strong. Steve is a fighter and he won't give up. Steve is the nicest guy and even though he's suffering he will always be there for friends and family with an ear, heart and smiles. They say people whom have been through hard times, have a better understanding of other people who are struggling, and this is Steve. Steve is so friendly always talking to everyone he meets and always making others days brighter spreading his kindness everywhere he goes. It's Steve's turn to get some much needed financial help, as he used to help so many when he was able too...he shouldn't have to worry about the pile of medical expenses and not having a reliable car.
Fiancé
A little more about Jamie - She's a hard working preschool teacher. Doesn’t miss a beat. She works full time. She even plans for her classes when she’s not at work. She is a college student working very hard to add to her teaching skill set and improve their future. Jamie works on her college homework from the time she gets home from work, until she goes to bed, and every Saturday and Sunday. Not only does Jamie work full time, put a lot of hours in on her college studies, but she is Steve's non-stop caretaker. Jamie doesn’t get a break either. Sometimes Jamie is up all night helping Steve with his symptoms, crying over Steve as he lies on the floor unconscious or shaking, and often watching Steve being loaded into an ambulance, and she still doesn’t skip a beat with her job or college. In addition, Jamie looks at all the food she buys for their home, all the beverages, dish soap, laundry soap, body wash, you name it, to make sure that there is nothing in them that Steve has reacted to in the past. Jamie double checks Steve's prescriptions for the same reason. One time, Jamie caught an error, with a medication that landed Steve in the hospital for two nights once before. Even though Steve's conditions have permanently changed his life, Steve sometimes believes Jamie has it harder. People only see Steve, outside of his home, when Steve is not at his worst. Even though people may see Steve faint, or fall, it’s only the tip of the iceberg. When Steve's at his worst, his fiancé (and a select few), are the only ones who see Steve, outside of a hospital. The first time Steve's fiancé saw his symptoms out of control, it shook her to her core, but Jamie stayed anyways because she's amazing and loves Steve to pieces. Jamie can see the fear in Steve's eyes when his symptoms become the worst. Steve does his best to try to hide that, but Jamie sees through that. Those occurrences usually end in “okay I think it’s time to call 911”. Jamie then is the master of ceremonies when the paramedics arrive. Jamie provides them with a full history, medication safe list, and medications that are not safe. Jamie does this cool, calm, and collected, as tears roll down her face. SHE IS AMAZING!! Most people would be scared. Even medical staffs get caught off guard because they have very little experience with the combination of all Steve's symptoms. Steve's fiancé has often walked hospital staff through the best care measures. SHE IS INCREDIBLE.
Vehicle
Steve is unable to drive due to his conditions. As a result, Steve's fiancé is the one stuck with all the driving duties. They have one vehicle. It’s a 2005 Honda Civic. It served Jamie well. Then, it served both of them well. Steve and Jamie take great care of it, and show the car lots of love, but like any older car, it is just getting tired and worn out. It has become very difficult for Steve and Jamie to keep up with the repairs, as old parts wear out and fail. In addition, it has become difficult for Jamie to feel safe in the car for drives that are longer than a comfortable distance. Jamie takes the car to work and grocery shopping mainly. However, when there is a work need at a different location, she has to find a ride, or use Uber. This adds additional expenses with funds they don’t have. In addition, getting the car repaired, means again needing to find rides for her to and from work, not to mention funds. Finally, there have been times that they had to incur the expense of an ambulance for Steve, out of fear that the car was not reliable enough at the time to get to the hospital. Steve and Jamie are fortunate to have mechanics that are honest, caring, and often go out of their way to help, in ways that truly surprise and bless them often. However, recently, the mechanics told them that their car is just getting old and worn out, and there isn’t much one can do about that.
Feelings
Steve has always enjoyed helping others, when he was in a better position. Helping people was a very satisfying and happy experience. However, being on the other side of things, that results in Steve needing help, is not easy for him. No matter how hard Steve tries, he can’t change what is happening to him. Steve tries to manage all these horrible conditions. The problem is, Steve can’t stop these physical illnesses because there is no cure just treatments to manage his quality of life. All Steve can do, is remain positive, despite these physical symptoms. No matter how much Steve doesn't want to believe it, his conditions are chronic and progressive so Steve needs help. Steve's friend once said, “when you need help, and others want to help you, not allowing them to help you, is denying them the gift of helping”. When Steve was the helper, he remembers times, that he felt hurt that someone didn’t want his help. Steve wants people to know his story, but Steve and Jamie would never want anyone to feel obligated to help. If Steve's story moves someone to help, out of desire, then that is what would be a blessing. If Steve's story helps others, dealing with their own challenges, then he would consider that a blessing as well. Steve and Jamie both have the kindest and most giving hearts whom definitely do not deserve these challenges, but we can all make a difference for Jamie and Steve with alleviating some of their financial burdens by donating. Every penny will mean the world to this amazing couple. Thank you so much!!
Organizer and beneficiary
Pamela Tufegdzic
Organizer
Waddell, AZ
Stephen/Jamie Kowalski/Highfill
Beneficiary