Major's Chiari Journey

Hello, my name is Melissa....I am a fully devoted mother to FOUR amazing kids. That cutie in the picture is my 6 year old son "Major!"  We live in Leesburg, Fl where he attends Fruitland Park Elementary school.       On April 3, 2019 our world was flipped upside down. Major was diagnosed with a severe Chiari Malformation of the brain.  (“CMs”) are neurological disorders in which the cerebellum extends out of the skull and into the spinal canal, which in turn blocks the flow of cerebrospinal fluid and puts pressure on the brainstem and spine causing havoc on the body. Majors MRI is showing signs of damage and signals already being crossed.  As if that isn't enough, Major also has what's called Basilar Invagination (bent brain stem).  It causes narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain)…… These two factors cause Major to have cranial instability. It would be like balancing a bowling ball on a rubber stick. With this being said Major will be undergoing brain surgery within the next 2 weeks called (Decompression with Duraplasty) as well as a fusion to help create cranial stability called (Occipital Cervical Fusion.) His fusion will be done with Titanium screws, plates and Cadaver bone.          Although there is no "Cure" for this malformation the decompression surgery is intended to alleviate the compression caused by a Chiari, and restore the flow of cerebrospinal fluid.  The Decompression part of the surgery will include: 1) Craniectomy: (removal of part of the sub-occipital skull)  2) Laminectomy of C1, C2 and in Majors case a high chance of C3  (removal of the lamina from the vertebra) 3) Duraplasty: opening of the dura (the outermost membrane enveloping the brain and spinal cord) and patching it so there is more room. 4) Cerebellar Tonsillectomy: removal/cauterization of the cerebellar tonsils allowing space. He will also be doing a Occipitocervial Fusion. This is still something I am trying to wrap my head around and get a little better understanding of. I will update everyone when I get the Fusion part of the surgery in writing.   Major's road to recovery will be a hard one that is certain; the possibility of being inpatient at a rehab facility in Jacksonville, physical therapy, refraining from all sports and having to wear a metal "Halo" type device for 3-6 months seems like a lot for a 6 year old to endure but I have faith in his abilities! He's an overcomer! Now being his mother I only wish I could take it all from him. They say there is a reason for everything and although I don't see it now I know that one day the view will be clear. Until then I will travel this journey with him.....    In a perfect world none of this would be happening- I would be able to work as I always have and take care of things on my own but unfortunately Major needs all of me right now. With this being said I come to YOU in need of help- Mother to mother, friend to friend, HUMAN TO HUMAN! Any monetary donations made would go towards bills to maintain my home for my 3 other children until surgery and recovery is complete and I am able to work again.  It would also help with my current transportation issue and fixing my car.  The list goes on and on at this point but one thing I know for sure is part of being a good parent is reaching out when you feel like your drowning and you cant do everything on your own.  Consider my hand held high and please throw me a life vest because this situation is by far the most challenging I have ever had to face. Simply put, while I am being Majors backbone I could desperately use a little relief off of mine.      I'd like to thank you all in advance for taking the time to read my story and please remember to SHARE IT! I would also like to ask that you add Major to any prayer lists you may be a part of as well as his siblings.. God bless you all and please remember to appreciate what you have! Your health! Your kids and family.... Stay humble.... LIFE happens and you never know  what it will throw at you.  Sincerely, Melissa Inglis #TeamMajor!!! #BeatChiari!!!
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Melissa A Inglis 
Leesburg, FL
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