Hello fellow citizens of this wonderful world -

My name is Emily Elizabeth and I hail from the land locked community of Juneau, Alaska. I am a self-employed Professional Organizer, Artist, STEAM Educator, and Cultural and Social Dance Instructor, Choreographer and Performer. I am also involved in several organizations including the local Makerspace, Gardening, Nature and Conservation Clubs, LARP and SCA groups, Scouting America, Cultural and Social Dance Communities and the Arts and Humanities Community to name a few.

I am also a disabled, single mom of four wonderful neurospicy, medically complicated children whom I homeschool. My children are Autistic and live with ADHD, Dyslexia, Sensory Processing Disorders and Anxiety. A couple of them struggle with Depression and Eating Disorders. The local school district would not accommodate my kids' needs so they could access a free, public education so after a decade of advocating for my kids in the public school system, and trying homeschooling for a couple of them off and on, my kids and I decided it was best for all of them to homeschool. It is very difficult and time consuming, but it has been totally worth the sacrifice to homeschool them and I wish I would have done this sooner!

Unfortunately, my children also inherited the medical conditions I live with - Ehler's

Danlos Syndrome (EDS is a connective tissue disorder), Mast Cell Activation Syndromes (MCAS is kind of like allergies on steroids), Postural Orthostatic Tachycardia Syndrome (POTS is a type of dysautonomia, basically the wiring of the nervous system is completely messed up) and Vocal Chord Dysfunction (VCD causes wheezing, swallowing issues, pain with talking and so on). We also have a plethora of allergies and compromised immune systems. Our rheumatologist suspects we have psoriasis and pemphigus, but we need to go to a dermatologist to get an official diagnosis.

All of these medical conditions are incredibly debilitating because they are progressive, have minimal treatment options, no cure and they impact every system and part of the body. Connective Tissue makes up about 25-30% of our bodies. In EDS, connective tissue is faulty, broken and weak, which in turn causes a plethora of problems from brain fog, joint dislocations, digestive paralysis, mast cell issues, nervous system dysfunction, cardiovascular issues, organ failure, aneurisms and more.

It is very difficult to get a diagnosis for

these medical conditions, especially for women. I lived my entire life in excruciating pain, severe allergies, rashes inside and out, constant illnesses, endometriosis, digestive woes and serious cardiac issues. In 2016, I experienced my first organ failure and ended up with a hysterectomy. My concerns and issues were dismissed by drs until 2017 when I found a specialist who diagnosed Mast Cell disorders. This gave me some answers but left a lot of questions. I finally got answers in 2021 when I and my children were diagnosed with EDS and all the other medical issues that come with it.

I was relieved to have answers but also felt so much despair that I could not be cured and go back to my active life as normal. The past few years have been incredibly difficult as my medical conditions have gotten much worse; because I spent the first 35 years of my life trying to live as an abled body person, I did immeasurable damage to my body. Years of hiking, weight lifting, dancing, aerial arts, eating a healthy diet (that I turned out to be allergic to), running youth summer camps, volunteering as a frefighter/EMT, having 9 difficult pregnancies, miscarrying 7 babies including a set of twins at 4mo, and giving birth to four babes including a set of twins two months early, having a PICC line for my last two pregnancies have left my body completely broken and barely functioning.

Due to this damage, my congenital heart defect, family history and life situation, I have been given a life expectancy estimate of 40-48yrs. I have already lived longer than my grandma who passed away when she was 24, and hope to live much longer than 48yrs old, but have been advised to follow my treatment plan carefully and get all of my affairs in order as soon as possible. I turn 40 in a few months and am hoping to get as much life stuff sorted out before then as possible.

Unfortunately, I have not been able to follow my treatment plan because I have not been able to get my Xolaire injections that help my digestive, respiratory and integumentary (Skin) systems and helps prevent anaphylaxis. Each of these injections cost several thousand dollars and are usually covered by my insurance but my long and difficult divorce has caused major problems with insurance covering my medical care costs. All of this has left me with over $35,000 of medical debt and a year of not being able to work much because my body is literally falling apart from the inside out without the Xolaire injections.

On top of all of this, my children and I have been displaced from our home for several months due to the record breaking cold snaps that broke our entire plumbing system and heavy snowfall that took out our deck railing and blocked our access to our house. I have accrued over $30,000 of expenses related to snow removal, damage from the cold/snow and alternative housing.

I am reaching out for your assistance to help pay off medical debt, unexpected expenses from the extreme weather and raise funds to cover my and my children's continued medical care. We require many medical devices to help with mobility, air purification, allergy prevention, and over the counter supplements and meds that insurance doesn't cover. We also have to travel to Anchorage, Portland or Seattle on a regular basis to manage our medical conditions, all of this adds up very quickly. Chronic, progressive medical conditions are extremely expensive and debilitating, especially without treatment.

I would be most grateful for any help to cover these costs so I can go back to providing for my children and contributing to my community. Any additional funds donated will be put in a trust fund for my children, so they can have support and financial stability long after I am gone.

Thank you for taking the time to read this and for considering helping my Children and I on our path to healing and health.

Sincerely,

Emily Elizabeth