Nicole's seizures & migraines
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This is our daughter, Nicole Durning-Hicks. She has had migraines and seizures for far too long and this time we pray that something can be done to stop them.
She started having the seizures when she was approximately 16yo. They gradually got worse and we found Dr Ramon Sanchez, a neurologist in Atlanta that worked with her trying to control the episodes. But when her insurance coverage stopped, we couldn't continue with him.
Sometimes Nicole would go several weeks or a month with no episodes, then without warning she would have them back-to-back for several weeks. More than once she had seizures strong enough to paralyze her right side which lasted several weeks. Once, she even went blind in one eye, but thankfully that was also only temporary.
Back in 1999, we were able to get her into the Mayo Clinic in Rochester, MN. They crammed what should have been 3 months of testing into about 2 weeks and they finally came up with the diagnosis of MELAS syndrome. You can Google that and read far more than you ever wish about the disease and it's disorder.
"MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) syndrome is a rare disorder that begins in childhood, usually between two and fifteen years of age, and mostly affects the nervous system and muscles. The most common early symptoms are seizures, recurrent headaches, loss of appetite and recurrent vomiting. Stroke-like episodes with temporary muscle weakness on one side of the body (hemiparesis) may also occur and this can lead to altered consciousness, vision and hearing loss, loss of motor skills and intellectual disability. MELAS is caused by mutations in mitochondrial DNA. "
Nicole is now 40 and even though they never fully stopped, the episodes have started reoccurring more often, this time with a vengance. Nicole is a wonderful Mom to our Granddaughter Gracie, and loving husband Billy. She has had numerous jobs but when the seizures start affecting her work, well you can imagine that employers just dont have ways to cope with it. She has not been able to work in over a year now. Nicole needs medical help but locally there doesn't seem to be anyone who is knowledgeable enough to do much more than give her meds for the pain.
We have been trying for months and have finally gotten her accepted back into the Mayo Clinic up in Minnesota, which is where the experts in MELAS Syndrome are, but the trip is more than we can afford. So in as much as I hate to beg, I would do anything to help my daughter be well, which I'm sure you would do for your children if the need ever arises.
Nicole's Mom (my wife Bonnie) will accompany her so that Nicole's husband can stay and not lose his job. This visit could take from 2 to 3 weeks and we will need help in air fare and lodging for the trip. We estimate it to be about $3500. They need to be at The Mayo Clinic on May 17 and we have taken the first step of faith in making the airline reservations.
My wife and I used to be involved in the motorcycling community and we took part in many fundraisers for children with cancer. I was always humbled by the strength of the parents of these children in putting the story of their lives out there when their child needed help, and now it's our time to ask for help from friends and strangers. We always knew that it made us feel better to give than to recieve and we will be eternally blessed by any gift of kindness to all who donate to help our daughter. Thank you and may God bless you and keep you (and your children) safe and healthy.
I am, humbly, Joe Durning
She started having the seizures when she was approximately 16yo. They gradually got worse and we found Dr Ramon Sanchez, a neurologist in Atlanta that worked with her trying to control the episodes. But when her insurance coverage stopped, we couldn't continue with him.
Sometimes Nicole would go several weeks or a month with no episodes, then without warning she would have them back-to-back for several weeks. More than once she had seizures strong enough to paralyze her right side which lasted several weeks. Once, she even went blind in one eye, but thankfully that was also only temporary.
Back in 1999, we were able to get her into the Mayo Clinic in Rochester, MN. They crammed what should have been 3 months of testing into about 2 weeks and they finally came up with the diagnosis of MELAS syndrome. You can Google that and read far more than you ever wish about the disease and it's disorder.
"MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) syndrome is a rare disorder that begins in childhood, usually between two and fifteen years of age, and mostly affects the nervous system and muscles. The most common early symptoms are seizures, recurrent headaches, loss of appetite and recurrent vomiting. Stroke-like episodes with temporary muscle weakness on one side of the body (hemiparesis) may also occur and this can lead to altered consciousness, vision and hearing loss, loss of motor skills and intellectual disability. MELAS is caused by mutations in mitochondrial DNA. "
Nicole is now 40 and even though they never fully stopped, the episodes have started reoccurring more often, this time with a vengance. Nicole is a wonderful Mom to our Granddaughter Gracie, and loving husband Billy. She has had numerous jobs but when the seizures start affecting her work, well you can imagine that employers just dont have ways to cope with it. She has not been able to work in over a year now. Nicole needs medical help but locally there doesn't seem to be anyone who is knowledgeable enough to do much more than give her meds for the pain.
We have been trying for months and have finally gotten her accepted back into the Mayo Clinic up in Minnesota, which is where the experts in MELAS Syndrome are, but the trip is more than we can afford. So in as much as I hate to beg, I would do anything to help my daughter be well, which I'm sure you would do for your children if the need ever arises.
Nicole's Mom (my wife Bonnie) will accompany her so that Nicole's husband can stay and not lose his job. This visit could take from 2 to 3 weeks and we will need help in air fare and lodging for the trip. We estimate it to be about $3500. They need to be at The Mayo Clinic on May 17 and we have taken the first step of faith in making the airline reservations.
My wife and I used to be involved in the motorcycling community and we took part in many fundraisers for children with cancer. I was always humbled by the strength of the parents of these children in putting the story of their lives out there when their child needed help, and now it's our time to ask for help from friends and strangers. We always knew that it made us feel better to give than to recieve and we will be eternally blessed by any gift of kindness to all who donate to help our daughter. Thank you and may God bless you and keep you (and your children) safe and healthy.
I am, humbly, Joe Durning
Organizzatore
Joe Durning
Organizzatore
Kite, GA