Cait's Service Dog Journey

Hello everybody! My name is Cait and I am working with an organization to get a service dog. I may look like a "typical" healthy 19-year-old but for years now, I have been struggling with several life-changing chronic illnesses. I started passing out when I was 9 years old, it was very spread out only occurring 4-6 times a year. It took 9 years to be diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). POTS causes your heart rate to spike and your blood pressure to drop when moving from sitting to standing, making you pass out. Now I am passing out about twice a week. This is the disorder that has changed my life the most. When I was 11 I was riding my bike to school on a busy street and I passed out, luckily a teacher driving by spotted me and pulled her car in front of me to block me from getting hit by an oncoming car. I have passed out in the shower, at work, at doctor's offices, physical therapy, and while home alone. This has become a big concern for my safety, and we are quite lucky I haven't seriously injured myself yet. This is where the service dog comes in, but I'll explain that later!

Despite occasionally passing out I was able to play sports, attend school, and do other typical teenage things. I was a competitive volleyball player in high school and fell absolutely in love with the sport. I got injured fall of my senior year and those injuries ended up being the end of my volleyball career, as well as stirring up several autoimmune disorders. I had ankle surgery in September 2019, then knee surgery in December 2019, and shortly after my knee surgery, I developed something called Complex Regional Pain Syndrom (CRPS). Complex regional pain syndrome is a condition that causes intense pain and other symptoms. Scientists believe abnormal nerve functioning causes an overreaction to pain signals that the nervous system can’t shut off. Although there is no cure, treatments are aimed at decreasing symptoms, restoring limb function, and maintaining your quality of life. Having CRPS felt like it changed everything. I could barely go to school, walking was very painful, I couldn't wear pants anymore because my leg was so sensitive to touch, and any cold sensation was unbearable.

Then in March 2020, we all know what happened and the world shut down. I started to develop lots of other troubling symptoms but most doctor's offices were closed. For the whole month of April, I was bedridden and really sick. It turns out I have something called Gastroparesis which causes food to just sit in my stomach for hours instead of being digested. I was hospitalized several times because I would go several days without being able to keep food down so they had to put in feeding tubes. That wasn't a feasible solution because SURPRISE I'm allergic to every feeding tube formula the hospital could find. It turns out I have a rare Mast Cell Activation Disorder (MCAD). Mast Cells are responsible for producing histamines, which cause allergic reactions. MCAD causes my mast cells to overproduce histamines randomly, especially when triggered by an allergen. While the true nature of the allergy may be mild, the overproduction of histamines causes anaphylaxis. I started having these episodes my freshman year of high school. These episodes occurred roughly twice a month. I was taken out of school, volleyball tournaments, and family events in an ambulance because of these frequent anaphylaxis episodes. We saw a specialist my sophomore year and started a medication that has done wonders, but I still have occasional breakthrough episodes. What an episode looks like now is a swollen face, swollen eyes, random rashes, tight throat, swollen tongue, and anaphylaxis.

All of these things seem strange and unrelated but there is an overarching condition that may be the cause of most of these issues. I have been diagnosed with something called Dysautonomia, which is a dysfunction of the autonomic nervous system. Your autonomic nervous system controls your involuntary bodily functions such as heart rate, temperature, blood pressure, digestion, and breathing rate. Dysautonomia has no cure and treatments just involve treating the symptoms.

I have been very fortunate to receive amazing medical care at UCSF Benioff Children's Hospital. I was admitted there for 17 days in June of this year and I was able to meet with a child life specialist who works with a service dog (pictured below). We talked over all of the incredible things that the dogs are trained to do and with the help of my family and several physicians I was able to apply several places for a service dog. Dogs have a miraculous ability to sense changes in heart rate and blood pressure. This would allow the dog to alert me and give me the chance to sit down and prevent a syncope episode. The CRPS can make it hard to walk sometimes so the dog will also be trained for mobility assistance. The dog is trained with all of my specific needs in mind, so it will also be trained to help retrieve medications, pick things up off the floor, alert me to allergens in food, and most importantly make sure I am safe and retrieve help if needed.

I heard back from a couple of them and I have partnered with an amazing organization called SIT service dogs and they will be helping me get a service dog! Unfortunately, this is not something that insurance covers, at all. The cost for the dog and the training it has to go through for my specific issues is $17,500. I will also be traveling to Illinois to attend training with the dog and to bring it home with me. The $17,500 does not cover any travel, hotel, or food costs for the week that I will be in Illinois. My family has set up this gofundme with a goal of $20,000 to help cover the cost of the dog, travel, vet care, and the accessories that the dog requires.

Having a service dog will give me the ability to be independent again and hopefully allow me to live my life without fear of standing up. I created this page to not only help fundraise but to also bring awareness to the rare chronic health conditions I have. Thank you so much for all of the love and support!

-Cait