Support for Charlie Elford living with LGS
Donation protected
Our family never envisioned that we would be reaching out in need of support via a Go Fund Me account. We now realize that life situations can change and can happen to anyone. Our family of four (mother and father along with 2 sons ages 16 and 9) have been living the American Dream. Both parents are college graduates with advanced degrees and former homeowners with 2 cars in the garage. However, due to the extraordinary health care needs of our youngest son Charlie our situation has drastically changed. Charlie requires around the clock care because of being diagnosed with Lennox-Gastaut Syndrome (LGS) which is a complex, rare, and severe childhood-onset epilepsy.
Charlie is under the medical care of Dr. Jules Constantinou, Director of Pediatric Neurology Center for Autism and Developmental Disorders Comprehensive Epilepsy Program for the Henry Ford Health System, Detroit, Michigan. To explain Charlie’s condition Dr. Constantinou states, “Charlie is in my care because of Lennox-Gastaut Syndrome which is a catastrophic epilepsy characterized by multiple seizure types and cognitive impairments. Charlie continues to suffer frequent, often daily, seizures despite treatment with 4 seizure medications administered around the clock in 8-hour intervals. The epilepsy is associated with severe systemic complications including protein caloric malnutrition, thrombocytopenia, episodes of pneumonia and need for G tube feeding and medicine administration.” Dr. Constantinou has also advised that due to the corona virus pandemic Charlie cannot afford risk of exposure to the virus due to his very fragile health condition. Charlie’s health needs are obviously great, and these needs have forced our family to make drastic changes.
Some of those changes have affected our families’ financial condition whereas, my wife and I have had to reduce our workloads which has considerably reduced our incomes. As an example, during the past year, we now have one 10-year-old vehicle with over 160,000 miles and it is currently in need of over $3,000 of repairs and not drivable. Both sets of grandparents are elderly on fixed incomes and have helped as much as they can. Presently, we are using an 18-year-old car that one of the grandparents are loaning to us. We went from owning a home to now living in a 2-bedroom apartment. We had to sell our home with an upside-down mortgage so did not realize any appreciation. The best help we have received to help with Charlie’s health costs (as our employer’s health insurance coverage was greatly reduced due to our decreased workloads) came a few months ago (after several attempts) when Charlie qualified to receive disability Medicaid. One of Charlie’s 4 medicines was not covered by insurance and costs were over $3,000 monthly. We were literally going bankrupt due to health costs. Again, who could ever envision this happening? Charlie now receives a disability check monthly for $244 and Medicaid is now covering the costs of his medical needs. We are incredibly grateful that Charlie now has his medicine cost covered.
We have thought about the idea of seeking support through the Go Fund Me account and have never been in a position where we find ourselves. We know we live in a caring society and realize there are people who have even greater needs than us. But we are trying extremely hard. We have faith that we will get back on our feet eventually. We have 2 tremendous needs that will directly help Charlie and of course indirectly help our entire family. Due to Charlie’s many medical appointments we desperately need good reliable transportation in the form of a newer vehicle and if we could obtain the services of some in home care relief (perhaps as little as 2 hours a day) that would greatly help our family. Charlie’s older brother we feel at times is somewhat neglected because of all the attention Charlie requires. His older brother is so loving and caring to Charlie. If we could get some relief, by paying a care giver a few times a week, then we could devote more quality time to Charlie’s older brother.
We have estimated much needed and dependable transportation to get Charlie to his health providers in the form of a newer vehicle could be about $15,000 and about 8 hours weekly in the form of relief care assistance and support would be about $8,300 for a year. If a Go Fund Me account could handle this assistance, we believe we can work toward increasing our work hours and get us back on our feet as a family. We strongly believe that such support will help us become in a position whereby we can then help others who face similar unexpected life situations and challenges.
We will be so grateful for any support we receive. It is all done in devotion to Charlie who is truly a miracle and we believe he is here to help provide hope to others.
Charlie is under the medical care of Dr. Jules Constantinou, Director of Pediatric Neurology Center for Autism and Developmental Disorders Comprehensive Epilepsy Program for the Henry Ford Health System, Detroit, Michigan. To explain Charlie’s condition Dr. Constantinou states, “Charlie is in my care because of Lennox-Gastaut Syndrome which is a catastrophic epilepsy characterized by multiple seizure types and cognitive impairments. Charlie continues to suffer frequent, often daily, seizures despite treatment with 4 seizure medications administered around the clock in 8-hour intervals. The epilepsy is associated with severe systemic complications including protein caloric malnutrition, thrombocytopenia, episodes of pneumonia and need for G tube feeding and medicine administration.” Dr. Constantinou has also advised that due to the corona virus pandemic Charlie cannot afford risk of exposure to the virus due to his very fragile health condition. Charlie’s health needs are obviously great, and these needs have forced our family to make drastic changes.
Some of those changes have affected our families’ financial condition whereas, my wife and I have had to reduce our workloads which has considerably reduced our incomes. As an example, during the past year, we now have one 10-year-old vehicle with over 160,000 miles and it is currently in need of over $3,000 of repairs and not drivable. Both sets of grandparents are elderly on fixed incomes and have helped as much as they can. Presently, we are using an 18-year-old car that one of the grandparents are loaning to us. We went from owning a home to now living in a 2-bedroom apartment. We had to sell our home with an upside-down mortgage so did not realize any appreciation. The best help we have received to help with Charlie’s health costs (as our employer’s health insurance coverage was greatly reduced due to our decreased workloads) came a few months ago (after several attempts) when Charlie qualified to receive disability Medicaid. One of Charlie’s 4 medicines was not covered by insurance and costs were over $3,000 monthly. We were literally going bankrupt due to health costs. Again, who could ever envision this happening? Charlie now receives a disability check monthly for $244 and Medicaid is now covering the costs of his medical needs. We are incredibly grateful that Charlie now has his medicine cost covered.
We have thought about the idea of seeking support through the Go Fund Me account and have never been in a position where we find ourselves. We know we live in a caring society and realize there are people who have even greater needs than us. But we are trying extremely hard. We have faith that we will get back on our feet eventually. We have 2 tremendous needs that will directly help Charlie and of course indirectly help our entire family. Due to Charlie’s many medical appointments we desperately need good reliable transportation in the form of a newer vehicle and if we could obtain the services of some in home care relief (perhaps as little as 2 hours a day) that would greatly help our family. Charlie’s older brother we feel at times is somewhat neglected because of all the attention Charlie requires. His older brother is so loving and caring to Charlie. If we could get some relief, by paying a care giver a few times a week, then we could devote more quality time to Charlie’s older brother.
We have estimated much needed and dependable transportation to get Charlie to his health providers in the form of a newer vehicle could be about $15,000 and about 8 hours weekly in the form of relief care assistance and support would be about $8,300 for a year. If a Go Fund Me account could handle this assistance, we believe we can work toward increasing our work hours and get us back on our feet as a family. We strongly believe that such support will help us become in a position whereby we can then help others who face similar unexpected life situations and challenges.
We will be so grateful for any support we receive. It is all done in devotion to Charlie who is truly a miracle and we believe he is here to help provide hope to others.
Organizer and beneficiary
Charles Elford
Organizer
Ann Arbor, MI
Jeff Elford
Beneficiary