Abby's critical medical journey to Colorado

Let me start by saying I am entirely humbled needing to do this but my daughter's health and well being comes before my humility. We have reached a point in our medical journey with Abby that we are needing outside help and have exhausted our resources locally and have been referred for specialized care and treatment for her rare condition mast cell activation syndrome, this is taking us on a critical and very necessary journey to Denver Colorado to seek help from specialists leading the way in her condition in hopes of being able to get her stable, at this point her life could quite literally depend on it as her condition has become very life threatening. 
My name is Brenda Riley and I am the proud mother of Abby and Peyton. Abby is 11 years old and earlier in 2020 was diagnosed with mast cell activation syndrome, also known as MCAS. December 12 2019 I picked Abby up from school and knew something wasn't right, she was covered in an almost hive like rash and very red and flushed in the following days and months she had repeatedly had these episodes. We noticed that she would have these "break outs" when ever she had been physical active such as playing at PE at school or doing her physical or occupational therapy treatments. We had countless emergency room visits, urgent care visits, saw an allergist, saw a dermatologist, brainstormed with her primary care physician, saw a nautropath, and every single doctor we saw with the exception of her primary care physician told me she had unexplained hives and had no solutions to offer us. In April of 2020 Abby's primary care physician had been relentlessly researching, she's spent much of her own private and personal time trying to pin point what could possibly be going on and she enlisted the help of her peers. This was the time in which we sat down and had a very real conversation about mast cell activation syndrome, we also discussed how at the rate Abby was progressing in it we should always have epi pens on hand. We were referred to Seattle Children's hospital allergy department however they would not accept the testing Abby had done, we got referred to the University of Washington allergy department and were put on a huge wait list, at this time I started digging deeper for physicians who could join our team and help.  July 19,2020 Abby had her first anaphylactic episode, the reality of the situation is that it's not something she ate, we had done the allergy testing and elimination diets etc. The reality of it was, she had simply taken a shower, she had a "break out" we administered her oral and topical Benadryl and she still progressed, this was Abby's first ambulance ride and she was transported to the local childrens hospital who made sure she was stable following her epi pen injection and sent us on our way. Two days later I submitted my resignation to my employer as I had been home with her following the hospital and could not fathom an episode happening with out me there, for her safety and well being and our entire families peace of mind I quit my job with out notice to care for her full time. I found an allergist in Bellevue Wa who was familiar with her condition and got us in two days after my phone call, this was after countless phone calls to more clinics than i can count. We started a new medication regimen and hoped for the best. August, came and brought another episode of anaphylactic shock this time she simply went from sitting outside on the front porch where it was about 65 degrees to coming inside the house where it was cooler, her body couldn't handle this transition, September brought weeks of local fires and smoke moving in from California and Oregon fires and the severe smoke and horrible air quality which brought again anaphylactic shock along with weeks of head and GI migraines for Abby. Mind you in all the passing time and days in between she is continually having "break outs" of these "hives" and we order Benadryl in bulk off of Amazon. We celebrated October with my eldest daughter's 13th birthday and Abby making it a month with no hospital visits or ambulance rides this was a victory! November 17th everything changed, we were taking my eldest daughter to an appointment of her own, it was a cool windy fall day and it did Abby in. The walk from the house to getting into the car was enough to put her body into shock, about 7 minutes into our drive she let me know she was breaking out and we gave Benadryl oral and topical, 7-10 minutes later I was exiting off the highway pulling over in a hotel parking lot giving her an epi pen injection while her sister called 911. Each time Abby has epi she is transported to the hospital and this time was the first time she had ever had to have lights and sirens, I took her sister to their aunts house due to covid 19 protocols she was not allowed to be at the hospital with us and made my way to the hospital. She was admitted into the childrens hospital following another anaphylactic episode in the ER, and 3 more times after she was admitted she had anaphylactic episodes as well, 5  times total in a matter of 26 hours! This was the most terrifying time of my life, on top of everything Abby has sensory processing disorder so each time she has these episodes she goes into sensory overload which increases the speed in which the anaphylaxes  progresses. We were sent home with new meds and well wishes, 4-5 hours later she had another episode thankfully no anaphylactic shock this time. Today is 11/25/2020 and I met with her allergist/immunologist and at this time she is having additional medications added but I am at a point where my child is no where stable and we need to consider additional help. One of the top centers for research and treatment of her condition is the National Jewish Hospital in Denver Colorado, and Abby's allergist/immunologist has put in a STAT referral for her. This means we need to get safely to Colorado, have funds for transportation,lodging,food medications that are not covered by her insurance and medical bills. At this time I am awaiting a phone call and I am unsure if they will accept Abby's medical insurance as she is on Washington state medicaid due to my inability to work with her life threatening medical condition. I am asking for family, friends, strangers and anyone who has it in their heart to share, donate and help us make this possible so that we might be able to get some answers to be able to get Abby safe and stable and to be able to have hope that some day she may be able to be a kid again. At this time she can't play outside with her sister, she can't participate in her physical therapy, occupational therapy, and really can't even leave the house with out it being a potentially life or death situation. Her entire life has come to a stand still and is controlled by her mast cell activation syndrome and the severity of her symptoms and fear of episodes, We are hoping that in getting to this institute we will be able to get answers and help in stabilizing her and being able to keep her safe and healthy. Her stability is important for many reasons and this condition has not only effected her but our family unit as a whole and her sister has sacrificed so much and we all worry about her safety and well being, we plan life out very carefully around MCAS and how it could effect Abby and her safety and well being. Please help us get to Denver, and try and find some answers so we can in hopes some day live with out Abby suffering daily, living in constant fear, with out Abby having to feel like she's trapped in her body and so that we might have a glimmer of hope of stability for Abby.