John's Medical Needs~The Chiari Man
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This fundraiser is being created to raise money for medical expenses for John, who has Chiari Malformation Type I. John is our son, brother, nephew/friend~ we admire his courage, heart and perseverance but more importantly we love him.
John will be 20 this month, and is facing a challenging year of medical expenses. His mother, who is raising him as a single parent on limited income, made enough last year to push the two just barely over the poverty level, which disqualified both of them from Medicaid. This disqualification means they will now have to pay over $23,015 for John’s medical expenses alone in the next year, which is nearly as much as his mother makes per year. On top of that, their home expenses are growing and they are in need of several important home repairs that cannot be made until the medical expenses are paid for.
John was diagnosed with Chiari Malformation Type I, an incurable neurological condition, when he was 5 years old. This condition causes the cerebellum to herniate into the spinal column, disrupting the flow of cerebral spinal fluid, and causing permanent damage to the central nervous system. Doctors said that he would quickly need decompression surgery to stop the progression of symptoms and nerve damage. While waiting for surgery, he and his mother had to evacuate Lake Charles, Louisiana due to Rita and the surgery was delayed. They landed in Arkansas, where John was able to finally have surgery in December. By this point, his condition had escalated and the surgeon said it was the largest cerebellum herniation he’d ever seen. Additionally, because of the delay, his central nervous system, parietal lobe (sensory processing), and frontal lobe (communication, personality, memory, language, judgment) all sustained significant damage. This damage has caused ongoing issues in his life, including chronic muscle spasms and headaches, communication difficulties, underdeveloped fine motor skills, low physical endurance, balance issues, and a long list of other issues that make normal daily activities near impossible. This means that he did not have a typical childhood, and will not have a typical life as an adult.
Though John is currently enrolled in online college (and excelling), he is unable to work due to his physical limitations and disabilities. Unfortunately, he has been denied disability status through SSD, even though his doctor, PT, and OT have all written letters in support of the status- his application is now at the Appeals Council and if denied again he will have to start the near two year process again. Additionally, his symptoms have been increasing over the past couple of years, and his deterioration could be a sign that he has developed another syringomyelia or needs his skull base enlarged again, which would require another surgery. He was given a 50/50 chance this could happen by his neurosurgeon at the age of five. In addition to this, there are several other medical and financial needs that come with living with Chiari, all listed below.
Nobody should have to turn to fundraisers in order to live, but this is the need. We are turning to the community, near and far, in hopes of raising enough money to cover John’s medical expenses for the next year (listed below).
Monthly Premium: $750/month. Total Cost- 9,000
Current Medical Needs with a $1250 deductible:
Urgent Full Spine and Head MRI: $2500 ($1250 out of pocket to meet deductible, plus an additional $350 post-deductible payment). Total Cost- $1600
Physical and Occupational Therapy: Twice a week PT (104 in the year) and two to three times a month in-home OT (30 visits total in the year covered on insurance), totaling 134 visits in the year . Insurance will cover at a $35 copay up to 30 combined visits ($1050), then the cost is $87.50 out of pocket. These services ceased December 31, 2019 and are much needed. Total Cost- $9,100
Sleep Study: Estimated at $300, and 20% coinsurance. Total Cost- 600
Neuro surgeon visit (at least 1 this year), $35 copay after deductible. Total Cost- $35
Neurologist visit: (at least two visits this year) $35 copay after deductible. Total Cost- $70
Primary Care Provider Visits: Average of 6 per year. $35 copay after deductible. Total cost-$210
Urgent surgical removal of 3 impacted wisdom teeth (separate dental insurance, not counted in medical deductible). $2500 total, with a maximum insurance payment of $1,000. Total Cost- $1,500.
This is a total of $22,115 in medical costs alone this year.
Additionally, John’s Chiari specialist appointments are located an hour away from where he lives. These trips usually take an entire day, which means his mother must take off of work (she does not receive benefits or paid time off), lose pay, and pay for gas/travel expenses.
Gas/travel expenses to and from home to Arkansas Children’s Hospital: Approximately $20 per visit, with 10 estimated visits over the next year. Total Cost: $200
Lost Wages (due to mother taking off of work for appointments, with no benefits)- Approximately $70 per day, with 10 estimated visits over the next year. Total Cost: $700
Total Additional Costs: $900
Total costs of accessing medical care over the next year: $23,015
These expenses do not take in to consideration any medical/dental/vision co-pay or deductible costs for his mother. We are asking to raise 25,000 and if we reach our goal, any excess will be used to make urgent home repairs/needed modifications.
Thank you for taking the time to read, share, and donate if you can.
John will be 20 this month, and is facing a challenging year of medical expenses. His mother, who is raising him as a single parent on limited income, made enough last year to push the two just barely over the poverty level, which disqualified both of them from Medicaid. This disqualification means they will now have to pay over $23,015 for John’s medical expenses alone in the next year, which is nearly as much as his mother makes per year. On top of that, their home expenses are growing and they are in need of several important home repairs that cannot be made until the medical expenses are paid for.
John was diagnosed with Chiari Malformation Type I, an incurable neurological condition, when he was 5 years old. This condition causes the cerebellum to herniate into the spinal column, disrupting the flow of cerebral spinal fluid, and causing permanent damage to the central nervous system. Doctors said that he would quickly need decompression surgery to stop the progression of symptoms and nerve damage. While waiting for surgery, he and his mother had to evacuate Lake Charles, Louisiana due to Rita and the surgery was delayed. They landed in Arkansas, where John was able to finally have surgery in December. By this point, his condition had escalated and the surgeon said it was the largest cerebellum herniation he’d ever seen. Additionally, because of the delay, his central nervous system, parietal lobe (sensory processing), and frontal lobe (communication, personality, memory, language, judgment) all sustained significant damage. This damage has caused ongoing issues in his life, including chronic muscle spasms and headaches, communication difficulties, underdeveloped fine motor skills, low physical endurance, balance issues, and a long list of other issues that make normal daily activities near impossible. This means that he did not have a typical childhood, and will not have a typical life as an adult.
Though John is currently enrolled in online college (and excelling), he is unable to work due to his physical limitations and disabilities. Unfortunately, he has been denied disability status through SSD, even though his doctor, PT, and OT have all written letters in support of the status- his application is now at the Appeals Council and if denied again he will have to start the near two year process again. Additionally, his symptoms have been increasing over the past couple of years, and his deterioration could be a sign that he has developed another syringomyelia or needs his skull base enlarged again, which would require another surgery. He was given a 50/50 chance this could happen by his neurosurgeon at the age of five. In addition to this, there are several other medical and financial needs that come with living with Chiari, all listed below.
Nobody should have to turn to fundraisers in order to live, but this is the need. We are turning to the community, near and far, in hopes of raising enough money to cover John’s medical expenses for the next year (listed below).
Monthly Premium: $750/month. Total Cost- 9,000
Current Medical Needs with a $1250 deductible:
Urgent Full Spine and Head MRI: $2500 ($1250 out of pocket to meet deductible, plus an additional $350 post-deductible payment). Total Cost- $1600
Physical and Occupational Therapy: Twice a week PT (104 in the year) and two to three times a month in-home OT (30 visits total in the year covered on insurance), totaling 134 visits in the year . Insurance will cover at a $35 copay up to 30 combined visits ($1050), then the cost is $87.50 out of pocket. These services ceased December 31, 2019 and are much needed. Total Cost- $9,100
Sleep Study: Estimated at $300, and 20% coinsurance. Total Cost- 600
Neuro surgeon visit (at least 1 this year), $35 copay after deductible. Total Cost- $35
Neurologist visit: (at least two visits this year) $35 copay after deductible. Total Cost- $70
Primary Care Provider Visits: Average of 6 per year. $35 copay after deductible. Total cost-$210
Urgent surgical removal of 3 impacted wisdom teeth (separate dental insurance, not counted in medical deductible). $2500 total, with a maximum insurance payment of $1,000. Total Cost- $1,500.
This is a total of $22,115 in medical costs alone this year.
Additionally, John’s Chiari specialist appointments are located an hour away from where he lives. These trips usually take an entire day, which means his mother must take off of work (she does not receive benefits or paid time off), lose pay, and pay for gas/travel expenses.
Gas/travel expenses to and from home to Arkansas Children’s Hospital: Approximately $20 per visit, with 10 estimated visits over the next year. Total Cost: $200
Lost Wages (due to mother taking off of work for appointments, with no benefits)- Approximately $70 per day, with 10 estimated visits over the next year. Total Cost: $700
Total Additional Costs: $900
Total costs of accessing medical care over the next year: $23,015
These expenses do not take in to consideration any medical/dental/vision co-pay or deductible costs for his mother. We are asking to raise 25,000 and if we reach our goal, any excess will be used to make urgent home repairs/needed modifications.
Thank you for taking the time to read, share, and donate if you can.
Fundraising team (4)
Claudia C-Rey Reynolds-LeBlanc
Organizer
Hot Springs, AR
Katie Gentry
Team member
Raised $315 from 8 donations
Donna Shade
Team member
Raised $150 from 2 donations
Katie Scarlett
Team member
Raised $100 from 1 donation
Melodie Modzelewski
Team member
Raised $40 from 1 donation
