Southern Zebra Northern Horse needs URGENT Help

March (4 month) 2024 UPDATE:

Autumn has lost most of the limb strength required to stand and the arm strength to pull her covers up after the 30+ min nightly seizure, chokes down all food & drink, requires nightly Benadryl for mild-moderate anaphylactic symptoms from pain induced mast cell reaction following the seizure. She also has developed what appears to be aphasia type dementia -inability to recall proper name of items - even her cat. Autumn is scared of the fact that her finger and toes are now curling at rest. YET this amazing young woman knows how to cherish the little things, in hanging up the latest window cling art, buying gifts for all young ones in her life, creating craft items she hopes to sell one day and pursuing time w/ friends whenever possible. She is her own shining star in the darkness of never-ending loss.

Autumn 10yrs ago: https://www.youtube.com/watch?v=WwBZdqKr2Sw

https://www.youtube.com/watch?app=desktop&fbclid=IwAR2iiz5aGzWsTjVjKhByIF6fXBfH0GWQ4675Sz_l_PLlUZo67S4q-1jrejk_aem_AWqd_qNAy7R3G7O7XRgE705MvoW_ZidmdYEz4oS7Wnd7FZ8Q9U4yX2Gcndmu4_y6uaoQ3i6mHOcuXXHHGArfVnwc&v=x6ZwjD1Os0w&feature=youtu.be

22 yr old Autumn Patterson-Van Pelt has asked me to be the organizer for this GFM effort. Autumn has been fully dependent on the wearing of a hard-cervical collar to stay conscious and breathe yet she continues to receive no treatment, direction or medical supervision for her continued life sustaining dependence on a cervical collar/ brace. To date she uses cervical collar support 24 x7, and yes this includes during sleep and showers since July 2019.

Autumn is currently LOSING her ability to see, speak, swallow, absorb food, breathe, balance, from suspected high intracranial pressure, brainstem compression and a phrenic nerve injury). Unfortunately, nerves in your neck run or impact every system in one’s body. Autumn needs critical care ASAP as she does choke on all fluids/ food, has several absent seizures throughout the day meaning she could have a fall or suffer a head injury at any time. Autumn also lives w/ intractable chronic pain. Since her VP shunt was removed, she has had a seizure (15- 20+mins in duration) every single evening within mins of rest (currently over 150 seizures).

Autumn has faced ongoing judgement and unfounded mental health labels to excuse all neurological symptoms and suffering for years. These willful actions are used to justify no appropriate diagnostics, treatment or rehabilitation. We believe Autumn’s history is a snapshot of systemic discrimination, as with or without a connective tissue diagnosis she has had few or very delayed investigations / effort to assist with her spinal cord injuries, cluster of exceptionalities or her other rare disease diagnosis.

Historically Autumn has received Ministry of Health Out of Country Funding on more than one occasion and would like to again make this request. Her GOAL is to seek Out of Country Funding to transfer knowledge & INFORM a local specialist how best to proceed with her (yet to be acknowledged (inconvenient diagnosis/ Heritable Connective Tissue Disease on THIS side of the border) complex presentation. This Go Fund Me is for $5000 for expenses related to accommodation & necessary travel to secure any imaging (upright MRI/ DMX) & ANY consultation deemed necessary by an Ontario specialist to stay alive and prevent profound / catastrophic deterioration & or disability. Any funds raised but not used will be donated to the Ronald Mc Donald House & the ILC Foundation.

In gr 6 Autumn was diagnosed with a rare genetic condition & with Ehlers Danlos Syndrome ‘EDS” by a genetic specialist and we were connected to the Improving the Lives of Children Foundation non-profit charity. This is the same year she had an occult tethered spinal cord released at a Hamilton Children’s Hospital. Unfortunately, we “the parents” mother and stepfather, were accused of child abuse because her peds neurosurgeon could not explain her intense spine pain and inability to walk. Several months later we were successful in proving that she was not abused, there is and continues to be a lack of knowledge of this rare disease and we were awarded costs.

In gr 10 Autumn was no longer able to attend school due to debilitating symptoms, seizures and the need to sleep sitting up. She had over 100 daily seizures. Despite clear fluid running from her nose and ears after every seizure no physician would do testing to rule out the highly suspected cranial cerebral spinal fluid leak. She was denied funding for an ‘EDS informed’ neurosurgical consultation so we (“the parents”) drove her and paid for a consultation and testing. November 2017 she was diagnosed with IIH (idiopathic intracranial hypertension) at Penn State. Despite sharing this new diagnostic insight, the neurologist continued to assert psychogenic causes for months of her suffering.

March 2018 Autumn was FUNDED out of Country to have a VP shunt placed in the context of EDS at Penn State. Three months after this shunt surgery, for the purpose of another Out of Country Funding Application for post op follow up, the IIH diagnosis was removed by the local peds neurosurgeon and replaced with hydrocephalus a diagnosis she has have never had. The peds neurosurgeon states that the CMPA (Canadian Medical Protection Association) advised that she ‘can not change the forms’ yet acknowledges that she does not have hydrocephalus.

January 2019 Autumn suffered an injury from laying flat in an MRI for 5 mins while under high pressure in her head (from IIH), while being evaluated for shunt revision. The impacts were immediate; speech stuttering, 20/10 neck pain and more problems with neck stability.

The pediatric neurosurgeon directed Autumn to attend the EDS clinic in Toronto even though she already had a diagnosis. On June 5 2019 her EDS diagnosis was removed and she was informed this was also not hypermobility spectrum disorder either. Autumn has the genetic variant of TNXB of 'unknown significance' and most people do not realize that this nor any HCTD is not covered under the Good Hope 'EDS' Clinic, as it is only funded for Heds / HSD. On this very same day Autumn was again denied funding for EDS informed neurosurgical consultation for cervical instability, the ‘tissue damage reasonably expected to result from a delay was listed by the neurosurgeon as... “irreversible swallowing problems or inability to walk”.

In July 2019, 1 month after the Good Hope clinic removed Autumn’s EDS diagnosis, she experienced a whiplash type injury at Camp. Approximately 1 week later she attended the ER for sudden onset of shortness of breath and eventually inability to stay conscious. She attended the ER of 3 different hospitals on July 14, 15, 18th and July 25. Her respirologist provided written direction to attend the ER stating his concerns of ‘respiratory instability secondary to cervical instability’. The Chiropractor x-ray report stated that she had a severe vertebral subluxation. Autumn received no meaningful medical treatment to which we have had no explanation as to why. Autumn has attended the ER more than 40 times in the past few years. Ironically the HSARB appeal for a funded ‘EDS informed neurosurgical consultation’ conveniently produced no transcript on the first effort (in peds) and she was unsuccessful in the second effort, 11 months later. Every formal appeal process and political effort has been proven unproductive.

What we have learned through this journey is that in Canada you can not have more than one thing wrong with you or happening at the same time, Physicians & hospitals will not be put into any ‘compromising position’ or be held accountable even when their negligence has left a patient to suffer/ die for conditions that do not fit on the assembly line of funded care. Inaccuracy of medical records is an irrelevant, common, & accepted practice. The more you speak the more reprisal you will sustain.

In 2020; again, “the parents” helped her when no one in the medical community would, and arranged a virtual American EDS informed neurosurgical consultation(s) which recommended a decompression and cranio cervical fusion- which no local physician agrees with. In 2021 an ER physician finally disclosed the long suspected phrenic nerve injury from 2019. Autumn’s journey with spinal cord injuries layered on rare disease/ diagnosis has left everyone of us traumatized. We have also become aware of 5 other young women who were not provided any treatment in Canada that have died from cranio-cervical instability with this presumed ‘rare’ disease. I am scared that she too will become another invisible statistic of no care for RARE.

https://www.cbc.ca/news/canada/london/fight-with-ohip-comes-to-head-1.5245107

https://www.thestar.com/news/queenspark/2015/10/28/ontario-pledges-help-for-women-with-rare-disease-eds.html

https://journals.sagepub.com/doi/pdf/10.1177/21925682211068520?fbclid=IwAR0RmxlPXnhUaj_Bghf7QOiE1Lb4A4PEFZ61_haOjEBWTA-d0ZolqbQBwmc

Craniocervical Instability in Ehlers-Danlos Syndrome—A Systematic Review of Diagnostic and Surgical Treatment Criteria (sagepub.com)

Southern Zebra/ Northen Horse needs your URGENT help.

Please spread this info / effort widely!