A Miracle for Mikey
The truth is... we're not ok...
What started like a neck injury during wrestling practice (in school) in December, turned into an in and out of ER/Hospitals long year nightmare.
Michael started high school last summer and got all excited about getting in the program he's always wanted. He was in gifted program, AICE Honors, was athletic, loved volunteering and always made time for his pets.
He's a house plant now.
After the neck injury, he started having seizures. 3-5 a month if he slept bad (poor neck posture).
Than he was diagnosed with "epilepsy" (because he had seizures) and was prescribed an anti epilepsy medication that started to cause more seizures.
Even though there is an overwhelming research and evidence on neck injuries and seizures, Nemours neurologists dismissed it and insisted on treating him with anti epilepsy medications!!! We were legally blackmailed into it, not fully knowing what we can and cannot do as parents...
With the medication, the seizures increased in frequency.
Than they increased the dose for increased seizures that lead to even more seizures.
First hospital stay was in June, and also first threat with child services and removing me from him because I questioned doctors decisions about medications...
Than another medication, stronger than previous one that led to a fall and - TBI / Traumatic Brain Injury (woke up groggy and drugged from medications).
Second hospital stay, also in June - this one for the TBI... Than TBI led to more seizures and, you guessed it - new medication...
New medications had such harsh side effects that he had to be hospitalized for that, also.
Than third hospital stay in July (ambulance involved each time - few times to Jacksonville, few times to Gainesville...).
You can’t imagine the heartbreak as I prayed over his unresponsive body during those ambulance rides...
Wolfson’s doctors decided to stop the new medication called Keppra cold turkey (never should've been done cold turkey, had to be weaned off ) and triggered more seizures... These are called breakthrough seizures (from withdrawal), people die of them all the time!!!.
Each seizure left him more exhausted, confused and affecting his cognition and speech...causing further brain damage.
They discharged us home with a print out about SUDEP - Sudden DEATH in teens with Epilepsy... That talks about risk of dying being higher with increased seizures...Breakthrough seizures that t h e y caused...
2 more hospital stays in UF Shands after that... Than another one in Mayo...
Not sure how we went from 3 -5 seizures a month to over 4,000 (!!!) so far...
As horrible as it sounds, we hoped for the surgery but... MEG scan showed that severity, frequency and intensity of the seizures started shrinking one part of the brain that affects the memory (hypo campus sclerosis) and left a scar there... surgery is now not an option and that’s also NOT where the seizures are coming from.
PET scan was clear. We’re back to square one one... Doctors just don't know how to help our son... Meanwhile, the neck fracture has healed...
We need help, please.
PRAYERS first, than the rest... If you belong to a church, please add Michael Gabriel's name to the prayer list.
If you have a bible study/womens/men study group, please take a moment and pray for my son...
Whatever your religion and beliefs are, I am begging all people with good and kind hearts to help the best way they can :(
MEDICAL CARE IN EUROPE
We have exhausted all of the options here. I know it in my heart that my son is not given a chance for healing because everybody is too proud to say they’ve made a mistake!
Europe has great care for cases like my sons and we need funds to go pursue that option.
Michael is so weak that he can barely handle a 30 minutes drive.
We need to fly him first class. Pay for housing, keep up with his diet and medical care.
please help us make this trip happen.
Medical bills.
I feel so ashamed to be asking help this way with both of us working, but, we're all out. We miss so many days from work so we could be in hospitals and doctors visits with him.
My husband stepped up and became a stay at home dad. When I can, and Michaels health permitting, I go to work - bills don't wait on anybody...
Hospitals keep calling about bills overdo, to claim whats theirs...
Unpredictable things like this happen, and not just to other people. One could never prepare for something like this. To watch their child go from healthy and happy to wasting away in hospitals :(
We need help covering his therapies, NUMEROUS doctors visits and treatments, neurofeedback, ambulance rides, hospital stays, tests, medications, possible surgery, speech therapy...
We just got a dozen of letters from school insurance saying they refuse to cover the bills because (in their mind) seizures have nothing to do with his neck injury...
TV Show “CHASING CURE”
At this point, its been over a year into the wild goose chase and going down every rabbit hole there is... we feel like we’re out of options. And doctors still don't know WHY or HOW to treat the damage thats been done so far.
We have heard of the show called “Chasing Cure” where the team of medical experts gets together and gives you the right diagnosis... WE NEED THAT!!!
We drove fast in the wrong lane for so long and have NO answers, no official diagnosis, no efficient treatment... and every new seizure is just another risk of SUDEP and another risk of further damage to his brain/hypo campus... You cannot possible imagine how long our days and nights are... Please help if you have any connections that can getMikey to that show, please...
If you have any ideas, PLEASE feel free to contact me.
UPDATE:
It is now February 2020 and we still don’t have answers. Michael is still struggling, daily...
We just can’t keep up with bills...
We went from going places to GoFundMe...
From an athlete to a houseplant...
From friends to just parents faces all day long...
From school to Hospital Homebound... barely leaving the house...
If you can donate, please find it in your kind heart to do so.
If you cannot help financially, please send him a card to cheer him on.
If you cannot send a card... Last but not least - please offer the PRAYER. Michael needs them right now.
Please help if you can.
THANK YOU!
*Thanks to your generous help and wonderful and loving hearts so far, we WERE able to purchase the HBOT with 1.5 ATA and Michael gets to use it frequently without having to travel all weak - as exhausted as he is - to and from Orange Park for those sessions.
This treatment helped him tremendously with TBI!
THANK YOU, from he bottom of our hearts!!!
