Help Improve Taylor's Quality of Life

Please join us in supporting our beloved Taylor as she faces the daily challenges of living with a series of complex health challenges.

Taylor is a dynamic and talented individual who deeply values the inherent beauty in the world found within people, animals and the planet. Her professional career most of her life included rescuing and working with animals, as well as working with those with memory and neurological conditions. Her greatest hobbies have always included rock hounding, hiking, camping, mushroom hunting, arts, and spending lots of time with their animals!

As the result of her deteriorating health, due to multiple medical conditions, she now finds herself unable to live life in the same way without major adjustments, accommodations and care.

Though she is a person with complex health conditions, she chooses not to let these define who she is. She faces each day with the help of her husband Nathan who is her full time Carer.

A typical day for Taylor and Nathan is a demanding schedule. The mornings generally start around 4am, which are spent setting up various medications and treatments as well as feeding tube regimens which will be continuous throughout the day and night.

Nathan assists Taylor with her care and daily needs and ensuring that she receives her medications and treatments on schedule.

Late evenings are often spent prepping for the next day’s medical needs, managing stressors, and finding moments of joy as much as they can together. Each day is a fight to find some semblance of normalcy amidst the relentless impact of her health.

Often times, Taylor and Nathan are traveling 4 hours round trip for urgent interventions, to undergo routine procedures and for follow up appointments with various specialists.

Frequent Virtual appointments, as well as phone conferences also require their time. Taylor and Nathan are also traveling to multiple weekly appointments at their local community hospital.

Taylor receives care from a dedicated medical team who are working tirelessly to manage her complex conditions. They include multiple specialist departments within Oregon Health Science University, Portland, Oregon and University of Washington, Seattle, as well as her local Community Hospital where she attends weekly.

Taylor's Medical Journey: Understanding the Challenges

What is EDs?

Ehlers Danlos (or EDs) is a genetic connective tissue disease which is multi systemic, meaning this affects nearly every body system, (such as skin, eyes, bones, joints, ligaments, blood vessels, organs etc). Individuals often experience co morbid conditions due to EDs being multi systemic, which impacts the musculoskeletal system, immune system, autonomic nervous system, gastro intestinal system and more...

What this means for Taylor:

Taylor's conditions likely stem directly from EDs such as Trigeminal/Occipital Neuralgia, Cerebral brain Aneurysm, motility disorders, recurrent infections, Dysautonomia, Joint issues, wound healing and so on..

What is Trigeminal and Occipital Neuralgia?

These conditions involve severe nerve pain in the face (Trigeminal), and back/top of the head (Occipital). They generally are caused by nerve compression or impingement of the nerve root as it exits the brain stem most often due to nearby blood vessel or tumor.

What this means for Taylor:

These conditions cause sharp shooting shocking like pain. This pain is extremely disabling, making it nearly impossible to do anything when an attack comes on. Multiple medications and treatments are required to keep these conditions somewhat managed. Taylor has undergone multiple brain surgeries and procedures.

What is Osteomyelitis?

Osteomyelitis is an infection of the bone which typically occurs due to bacteria or fungi.

What this means for Taylor:

Taylor's case is complicated by a bacterium which also creates biofilm. The particular bacterium is able to hide intracellularly which evades the immune system allowing it to persist. Separately, biofilm is extremely difficult to eradicate. Several Infectious Disease Specialists at University State Medical Hospitals work together and are unsure where infection is re-seeding from (suspecting it is either bone or Teflon which is deep down at Taylor’s brain stem, from her initial Craniotomy surgery). This condition causes her severe pain and aching in the skull, and has left her without a covering over an area of her brain. She has remained on long term antibiotics for the last 6 years which will continue.

What are Gastro/Intestinal Motility disorders?

These disorders again can connect with EDs which then affect the tissues and muscles of the organs within the digestive system. This leads to complications with downward movement of food through the stomach and intestines and proper absorption of nutrients.

What this means for Taylor:

Taylor often experiences severe symptoms which can include nausea, vomiting, bowel issues, abdominal distension, as well as difficulty absorbing nutrients. Taylor requires enteral nutrition through feeding tube due to upper and lower GI motility disorders.

The Hidden Burden of Taylor's medical conditions

Financial struggles

Taylor's serious medical conditions have not only just taken a toll on her health, but have also created significant financial burdens for her and Nathan. Here is how these financial impacts manifest:

Medical expenses: Taylor's conditions require frequent consultations and follow ups with specialists, numerous ongoing procedures, long term medications treatments and medical equipment and supplies. Much of what Taylor requires is either not available or covered through insurance.

Daily Living expenses: With Nathan as Taylor's full time Carer neither can work outside of the home, leaving them without any income. They need to cover basic living costs such as rent, utilities, groceries and daily home needs.

Transportation: Scheduled and urgent trips to the hospitals require gas money, car maintenance/upkeep and eventual replacement. Taylor and Nathan's current lack of a dependable car driving often to and from OHSU adds to these challenges.

Housing: Taylor's medical conditions require a home that is equipped and accessible for her needs. Modifications and equipment has been an ongoing process.

Support Taylor's fight, help us reach our goal...

Taylor and Nathan are facing immense medical and financial challenges and they need our help. Taylor's Gofundme campaign became necessary to cover essential medical expenses, living costs, and improve quality of life. To date there have been 148 generous donations, bringing us closer to our target, but we still need your support to reach our goal!

How you can help:

1. Direct Donations: Every contribution, no matter how small, brings us one step closer to our goal and makes a significant difference in Taylor and Nathan’s lives. For example, Taylor frequently travels to see her care team in Portland, so even small donations to fill up the gas tank on these trips goes a long way.

2. Share the Campaign: Spread the word by sharing the GoFundMe link on your social media platforms. Encourage your friends, family, and followers to contribute and share the campaign as well. Increasing visibility of Tay's situation delivers on Taylor's wish to spread news and build awareness around the complexity of Connective tissue diseases.

3. Organize Fundraising Events: Host a virtual or in-person fundraising event, such as a charity auction, bake sale, or fun run. All proceeds can be donated to Taylor’s campaign.

4. Creative Contributions: Creativity is in Taylor's soul and reaches out through her fingertips. Join her and other creatives in her community by creating and selling crafts, artwork, or services, with proceeds going to the campaign. This not only raises funds but also raises awareness about Taylor’s story.

5. Build a Healthy Community: Join the many of us that gain delight in supporting Taylor through healthy community building. This may look different for each of us, but at the heart is the desire coupled with actions that seek to include those around us with chronic health issues. Too often these individuals are excluded and marginalized socially, financially and politically in our culture. Dynamic individuals like Taylor, with various tubes, scars, mobility devices and restricted movements need us - and we need them.

Join Us in Making a Difference:

Your support can help alleviate the financial burden on Taylor and Nathan, allowing them to focus on health and healing. Together, we can reach our goal over time - providing support that makes a meaningful difference in their everyday lives. Thank you for your kindness, generosity, and compassion.

Thank you for choosing to help improve Taylor's quality of life.

Sincerely,

Lesli-Ann and Daniel Hambley

(Taylor's Mum and Dad)