Help Improve Taylor's Quality of Life

Hi! My name is Lesli-Ann Hambley. My husband and I our continuing to raise funds for our Beautiful daughter Taylor.

We are urgently seeking donations to help Taylor’s overall quality of life; through assisting her and her husband Nathan’s financial burdens of both health/medical and living expenses.

Throughout the last 2 years, and since our last Gofundme update, Taylor’s overall health and quality of life has seriously declined. She has had an overwhelming amount of multi systemic disorders surface, including but not limited to, autoimmune processes, a spontaneous hip labral tear and injuries to her various joints. This has required more Specialists, more surgical procedures, additional Genetic testing and much more trauma to her already frail body. With an underlying systemic Connective Tissue Disease, many times throughout the years Surgeons and Specialists, have considered and suggested that this may at least in part be contributing to Taylor’s various complications, such as wound breakdown, failure to heal, rejection of materials, as well as the chronic conditions surfacing.

To date (June 2024) Taylor continues to fight Trigeminal and Occipital Neuralgia, as well as continuing to fight skull base Osteomyelitis. She continues on lifelong antibiotic therapy and various treatments daily. Sadly, Taylor has required enteral nutrition through a GJ feeding tube for the past year and a half. This is due to motility disorders of the gastric and intestinal tract.

Taylor’s body tends to fight against these tubes. There have been countless trips to the ED, as well as urgent tube replacements. Just recently, Taylor’s expansive GI Team has come up with a long-term solution, which will require a surgery to separate the tubes. Any day now Taylor and Nathan should receive the call with a surgery date.

Aside from the stress of the constant medical appointments and procedures, comes the obvious stresses of financial burdens as well as many needs that are going unmet. Together these continue to have a significant negative impact on their lives, as Nathan has become Taylor’s full time Carer, and cannot work outside of their home.

Not being able to work outside of the home, Nathan and Taylor have no income of their own, no appropriate accessible housing of their own or a reliable vehicle of their own. Taylor’s direct care needs, as well as managing all appointments and procedures are overwhelming to say the

least. Living in this catch 22 situation, relying on others to help financially for even basic needs, is continuing to have a negative impact on Taylor’s overall health. Our families are doing everything we can to try to remedy this as best as possible. However, Taylor and Nathan need so

much more.

ALL donations will go immediately to Taylor’s and Nathan’s health, living and medical related equipment and expenses. We will be posting weekly updates, to include specific needs we are seeking help for as well, both immediate and long term.

Lastly, Thank You to ALL of you! Asking for help is not an easy or comfortable thing for Taylor and Nathan. We are ever so grateful to all who continue to donate to Taylor (Tay), to those who constantly reach out to our family with messages of love and prayer and to those who have helped in other ways.

We ask that you please share Taylor's Gofundme with as many people as you can.

Thank you!

The Hambley Family

About Taylor:

Taylor is one of the most kindhearted, authentic and determined person you could ever meet. Prior to becoming seriously ill, she spent several years of her young adult life dedicated to caring for patients with Memory Care, as well as Neurological Long Term care of patients with similar

challenges that Taylor herself now lives with.

Taylor was full of life and energy; aside from her full time career, Taylor was often immersed in her Drawing and Art creations or Hiking and Mushroom hunting in the Forest or rock hunting at the Coast alongside her amazing Husband Nathan.

Taylor’s true lifelong passion has been caring for Cats, as well as rescued or abandoned Ferrets.

Her own misfit menagerie have been long time, devoted companions, (as you can see in several previous updates over the years). They bring Taylor and Nathan both so much joy and love; often sensing when Taylor needs them close by due to pain or other.

Taylor's Medical History:

After suffering for over a year, in 2015, Taylor was diagnosed with Trigeminal Neuralgia (TN) by OHSU Neurosurgery. A few weeks later, we learned Taylor also had an unrelated brain aneurysm that was about to rupture. In late 2015, Taylor underwent Microvascular Decompression Surgery for her TN and in early 2016 she underwent procedures for her aneurysm. Soon after these procedures, it became evident to both of her Neurosurgeon’s that Taylor presented with various complications, such as fragile tissue and difficultly healing, likely due to other underlying conditions. She was urgently hospitalized soon after her MVD surgery, with Meningitis, which resulted in her losing a significant amount of hearing, as an onset of balance issues. Soon after this, she was urgently hospitalized for a Cerebral Spinal Fluid Leak.

The most significant, puzzling concern to Taylor’s Surgeons at that time was determining why her Craniotomy Incision from her MVD surgery was not completely healing and staying closed. At her 3 month post op, they determined they needed to go back in and debride the area, expecting it to then heal. When it failed to heal and symptoms worsened, they held off on going back in surgically, and referred Taylor for Genetic Testing to rule out a very serious Connective Tissue Disorder. This was necessary due to her continued failure to heal as well as having a family history of brain aneurysm. Thankfully, this test came back negative, however, it was determined that she was positive for another type of underlying connective tissue disorder.

In 2018, Neurosurgery determined they had no choice, but to operate in order to remove what hardware and material they safely could. It was this surgery that through Pathology samples, they learned that Taylor has had a rare micro bacteria attach itself to the implanted material and now was on the bone of her skull. Taylor’s diagnosis became Osteomyelitis of the Skull. Several Neuro debridement surgeries subsequently were done. Unfortunately, cultures continued to show positive for the Pathogen.

Taylor’s last surgical debridement/wound revision surgery was June 2021. Despite having undergone several weeks of IV Antibiotic Therapy prior to surgery, this Bacterium still grew on all tissue, muscle and bone samples sent to Pathology. It was at this time, that OHSU asked University of Washington to join Taylor’s Team.

After traveling to Seattle, UW’s Infectious Disease Team informed us that they were not at all surprised by perplexing presentation. They explained that this stealth pathogen typically evades the immune system which allows it to persist. However, the team still does not have clear answers today to where the infection keeps re-seeding from and explained further that it is either bone and/or material that is still implanted near the brain from Taylor’s very first brain surgery for her Trigeminal Neuralgia 2015.

Simultaneously, we also consulted with UW’s Neurosurgeon. It was agreed by Infectious Disease and Neurosurgery from both UW and OHSU, that additional brain surgery to remove this material would be dangerous due to further infection risk, as well as replacing any skull covering now would be unlikely. Because of this, Taylor will continue to not have a covering over this area of her brain. Not having a covering over the original craniotomy site has begun its own complications.

With additional Neurosurgery not being an option; the joint team determined that they needed to attempt a several month course of a combination of both oral and IV antibiotics. Upon completion, lifelong suppressive Antibiotic treatment for Taylor would begin and continue indefinitely. Taylor continues to be under the care of the joint Infectious Disease team with UW and OHSU, and both are asking us to travel to Stanford University, in order to expand the team even further.