Donation protected
Hello, my name is Niki Levy. I am a family friend of the Demas Family. With permission from the Demas family, I want to share some information that led to creating of this fund.
Mark Demas, age 57, is a loving dad to Jake, Heidi, Bridget, and Adam. He is also a proud grandpa to his first grandchild, Oliver age one, pictured above.
Five years ago Mark started experiencing issues with his ankles. It was difficult for him to walk without losing his balance and tripping. After many attempts to correct the problem himself with ankle braces, he sought medical attention. At first, they told him he had Drop Foot, in both feet. As the symptoms progressed, he scheduled an appointment at the University Of Chicago, there they informed him that he had ALS (Lou Gehrig's Disease). ALS is a nervous system disease that weakens muscles and impacts physical functions. In this disease, the nerve cells break down, which reduces functionality in the muscles they supply.
After the initial diagnosis, Mark had to start using a cane or a walker. Shortly after, he became wheelchair bound. Mark leased an Astral Ventilator to help with his breathing and to keep his oxygen levels regulated. At first, Mark only had to use the ventilator overnight and for a couple of hours throughout the day. However, recently he became more dependent on the machines.
During this time, Mark lived with his daughter Heidi and son Adam. They became his sole caretakers at the ages of 23 and 22. Heidi and Adam helped with all of his day to day tasks like preparing his meals, managing his medications, and with his hygiene. Mark was not able to transfer himself from his wheelchair independently. This created anxiety for Mark that became so debilitating that he was unwilling to leave his wheelchair even with medication. Mark had been sleeping in his wheelchair for the past two years.
In January of 2021, Mark was having a tough time managing his pain and anxiety. These issues became so unbearable that he needed one of his children to stay up all night with him as well as to be home with him at all times. His oxygen level would drop and then come back up with the use of his Astral Ventilator.
On February 22nd 2021, Mark had not slept the night before due to his machine not pushing air correctly in addition to his pain levels. The day started with his respiratory therapist coming to the house to change his machine settings in an attempt to make him more comfortable. As the day went on, Mark stayed on his machine to try and get some rest. Around 2:00 that afternoon, Adam had taken him to use the restroom. He hurried out a couple minutes later worried that his dad was becoming unresponsive. Adam placed the ventilator mask on him while Heidi called 911. Mark's other son, Jake, hurried to the house as this was happening. They moved him from his wheelchair to the floor so Jake could start CPR on his father with the help of a dispatcher. Moments later, the paramedics arrived and took over CPR. He was brought to St. James Hospital in Olympia Fields and admitted into the Intensive Care Unit. During his stay there, Mark had surgery to place a feeding tube and receive a tracheotomy to help him breathe.
Mark is still currently in the Intensive Care Unit at St. James Hospital. His insurance will not approve his request to transfer to an Long Term Acute Care Facility. After speaking with Mark's ALS Specialist, she informed the family that he would need round the clock care and it's no longer an option for his children to care for him. Currently, Mark is unable to speak but can write and text small messages. He will be dependent on the ventilator with oxygen now and it is not known at this time if he will ever be able to use his wheelchair again.
Mark's wishes are to come home and be surrounded by loved ones for the duration of his disease. Unfortunately, those wishes come with a considerable cost. I am hoping that this fund can help take the financial burden from his four children. This would allow the kids to be with their father and for Mark to spend the remaining time he has surrounded by those he loves most.
Any size donation to this fund will be used for medical bills and to help minimize the financial burden of this horrible disease. Your support and prayers are greatly appreciated.
Thank you and God Bless from the entire Demas family.
Mark Demas, age 57, is a loving dad to Jake, Heidi, Bridget, and Adam. He is also a proud grandpa to his first grandchild, Oliver age one, pictured above.
Five years ago Mark started experiencing issues with his ankles. It was difficult for him to walk without losing his balance and tripping. After many attempts to correct the problem himself with ankle braces, he sought medical attention. At first, they told him he had Drop Foot, in both feet. As the symptoms progressed, he scheduled an appointment at the University Of Chicago, there they informed him that he had ALS (Lou Gehrig's Disease). ALS is a nervous system disease that weakens muscles and impacts physical functions. In this disease, the nerve cells break down, which reduces functionality in the muscles they supply.
After the initial diagnosis, Mark had to start using a cane or a walker. Shortly after, he became wheelchair bound. Mark leased an Astral Ventilator to help with his breathing and to keep his oxygen levels regulated. At first, Mark only had to use the ventilator overnight and for a couple of hours throughout the day. However, recently he became more dependent on the machines.
During this time, Mark lived with his daughter Heidi and son Adam. They became his sole caretakers at the ages of 23 and 22. Heidi and Adam helped with all of his day to day tasks like preparing his meals, managing his medications, and with his hygiene. Mark was not able to transfer himself from his wheelchair independently. This created anxiety for Mark that became so debilitating that he was unwilling to leave his wheelchair even with medication. Mark had been sleeping in his wheelchair for the past two years.
In January of 2021, Mark was having a tough time managing his pain and anxiety. These issues became so unbearable that he needed one of his children to stay up all night with him as well as to be home with him at all times. His oxygen level would drop and then come back up with the use of his Astral Ventilator.
On February 22nd 2021, Mark had not slept the night before due to his machine not pushing air correctly in addition to his pain levels. The day started with his respiratory therapist coming to the house to change his machine settings in an attempt to make him more comfortable. As the day went on, Mark stayed on his machine to try and get some rest. Around 2:00 that afternoon, Adam had taken him to use the restroom. He hurried out a couple minutes later worried that his dad was becoming unresponsive. Adam placed the ventilator mask on him while Heidi called 911. Mark's other son, Jake, hurried to the house as this was happening. They moved him from his wheelchair to the floor so Jake could start CPR on his father with the help of a dispatcher. Moments later, the paramedics arrived and took over CPR. He was brought to St. James Hospital in Olympia Fields and admitted into the Intensive Care Unit. During his stay there, Mark had surgery to place a feeding tube and receive a tracheotomy to help him breathe.
Mark is still currently in the Intensive Care Unit at St. James Hospital. His insurance will not approve his request to transfer to an Long Term Acute Care Facility. After speaking with Mark's ALS Specialist, she informed the family that he would need round the clock care and it's no longer an option for his children to care for him. Currently, Mark is unable to speak but can write and text small messages. He will be dependent on the ventilator with oxygen now and it is not known at this time if he will ever be able to use his wheelchair again.
Mark's wishes are to come home and be surrounded by loved ones for the duration of his disease. Unfortunately, those wishes come with a considerable cost. I am hoping that this fund can help take the financial burden from his four children. This would allow the kids to be with their father and for Mark to spend the remaining time he has surrounded by those he loves most.
Any size donation to this fund will be used for medical bills and to help minimize the financial burden of this horrible disease. Your support and prayers are greatly appreciated.
Thank you and God Bless from the entire Demas family.
Organizer and beneficiary
Nicole Levy
Organizer
Frankfort, IL
Heidi Demas
Beneficiary