Story
Madison Williams “Maddy Hatchett” is a 26 year old Austin area songwriter, guitarist, and singer. She is engaged to her Fiancé, Ryan, and together they share two beloved kittens, Poke and Fiona. Maddy is suffering from Craniocervical Instability (as a complication from hypermobility and Klippel Feil Syndrome) which has left her severely disabled and unable to do the most basic things. Please help her afford life-saving surgery if you are able.
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Dear Friends and Family,
I have some difficult news to share about my health. I’ve been reflecting when to share this and how to as the past 5 months have been so unpredictable and filled with immense grief. I was preparing for my wedding in Spring and now I lay here surviving each day.
I am suffering from severe Craniocervical Instability which means the ligaments that attach my skull and spine are too loose. This has caused severe neurological symptoms and my skull to slip forward on my spine, keeping me bedbound 21+ hours a day since January. I also am diagnosed with Basilar Invagination and Retroflexed Odontoid from the instability which is stretching my spinal cord and compressing my brainstem in a serious manner. My symptoms have included severe nerve pain, visual disturbances, POTS, gait instability, tachycardia, and too many to list. Perhaps the most difficult symptom is the physical intense wobbling of my “bobblehead” which is so unbearable I can only stand 10-15 minute at a time with someone holding my shoulders or head.
Every second of being upright is an unbelievable battle as my symptoms are nonstop 24/7. I cannot do any tasks on my own, requiring significant assistance for the most basic things. Over the past months we’ve tried several conservative treatments including stem cells (PICL) , AO Chiropractic, and specialized Physical Therapy. Despite these efforts I’ve been on a steady linear decline and with the danger to my nervous system and life I am now facing surgery. This particular surgery is an occipital cervical fusion in which the skull is fused to the cervical spine. I do not yet know how low we will fuse my spine until further in person examination but range of motion in the head and neck are greatly impacted.
This is a very complex neurosurgery and only a handful of experts in the world have the skill and volume of experience to be safely entrusted with this procedure. Hence, we are having to travel out of state for surgery. The surgery, hospital stay, various rehab and therapies, and travel are financially strenuous so a GoFundMe has been started to help tackle the enormous expense.
My first in person exam is scheduled for June 16 and we are hoping to schedule the surgery shortly afterward.
Any help is a gift toward my recovery that is deeply appreciated. I dream of going on walks, making music, and getting married to my dear fiancé, Ryan. Despite my suffering I am very fortunate for the love and support of my friends, family, and community and I hope to be back and out in the world again whatever my new normal may be. I couldn’t do it without y’all.
Love Always,
Madison
Organizers :
Sofia Hutton is organizing this fundraiser.