Hailey’s Head Start

HAILEY’s HEAD START

Hailey Austed….where do you even start? She has more courage than anybody I know. She is an owl whisperer, connected to the forest. She is an artist, a craftsperson of wood, wool and plants. She is an old soul. She is a diligent 4.0 student, and if illness had not sidelined her, she would be dancing her way to prima ballerina in some beautiful cosmopolitan city or attending a university to pursue her dream of a higher education.

It’s heartbreaking that on a daily basis Hailey experiences extreme pain, seizures, persistent dizziness, brain fog, low blood pressure and high heart rate, aphasia, gastrointestinal issues, gait difficulties, profound fatigue, hearing loss and vision problems. You can imagine how this impacts her life. No driver’s license, no summer camps, no regular school experiences. Life on hold, yet somehow she makes life happen and happen with a flair.

After 10 long years of chronic and acute illnesses, wheelchairs, hospitalizations, doctors, tests and more questions than answers, Hailey was recently diagnosed with Chiari Malformation and Cervical Cranial Instability likely caused by Ehlers-Danlos syndrome. Chiari malformation is a condition in which brain tissue extends into the spinal canal. CCI is the structural instability of the craniocervical junction. CM/CCI primarily occurs in people with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue.

Hailey’s illness was diagnosed by a skilled and renowned neurosurgeon in Maryland. Now, this same doctor has offered Hailey a way forward to a bright future by way of a complex but achievable surgery which will greatly improve her quality of life. He and his colleagues have successfully performed more than five hundred surgeries on cases like this. For a condition as rare as Hailey’s, he is the master of his field

Hailey adopted ‘Twig’ to train as her service dog about a year ago when he was just a young pup. Hailey, with guidance and support from her mom, Leah and Redwood Coast k9, is training Twig to help her gain more independence and remain safe. Twig has learned to alert Hailey before a seizure happens, guide her to a safe place, and stay with her during a seizure. He is learning many other helpful commands as well. Twig is a constant companion and is able to bring to Hailey a certain amount of security and a HUGE amount of love.

Hailey’s and Leah’s financial needs will be many. They will need to travel between Maryland and home at least twice- once for tests and appointments and once for the surgery and rehabilitation. Leah, of course, will be Hailey’s caregiver and will not be able to work and financially provide for the family during the time she is caring for Hailey. She and Hailey will need lodging near the hospital for anywhere from a month to six weeks. They will need to rent a car. All of this will be worth the effort and expense because of the hope that Hailey will have a more normal life, a life that most of us take for granted.

Hailey needs the community’s assistance as much as she’ll need help from her doctors and therapists. She needs our mental, spiritual and financial support. She needs us to help her and her mom through the tough parts of surgery, rehabilitation and healing.

Through it all, there is no doubt, not one, that Hailey will succeed and she will be the student, the craftsperson and the beautiful young woman whom she is meant to be. We will bear witness to her success. And her success will help others as she shares the wisdom gained in this wayward adventure that is her life.

Hailey remains undaunted and determined. She is determined to live and live well. She is determined to create her own amazing future. And I have no doubt that she will do just this.

Thank you for reading Hailey’s story and bless you for any help you may choose to contribute, be it spiritual, financial or both.