Hi, my name is Taunya and my husband is Chris. We need your help!
Our beautiful talented; 16-year-old daughter, Peyton has been diagnosed with a severe “fainting disease” called Postural Orthostatic Tachycardia Syndrome (POTS). Her other side effects of POTS are: Headaches, Nausea, Abdominal pain, Vomiting, Chronic Pain (General), Chest Pains, Heart Palpitations, extreme Fatigue, Shortness of Breath, Insomnia, Brain Fog, Sweating, Weakness, and Tremors.
Monty Python’s Spamalot May 2018
Peyton started fainting at the end of October 2018 and now faints 10 – 25 times per week and is in a wheelchair at school. She has had 15 concussions, torn all the ligaments and tendons in her left leg and has sprained, strained or hurt her back, neck, elbows, wrists, arms, knees, feet and hips from fainting.
Part of Peyton’s syndrome is that she gets brain fog before she faints, so she can’t speak, move (to sit or lay down) or let anyone know that she’s about to faint. This has caused multiple injuries over the course of the last 14 months.
We have seen 6 Pediatric Specialists with testing for all major functions in her body. Everything has come back clear or normal. She has had an MRI, EKG’s, EEG’s, Echocardiogram, Neuro Testing, Ultrasounds, FULL Bloodwork(s), X-Rays, Acupuncture, Acupressure, and Hypnosis. She’s been given multiple medications for depression and anxiety (which she does not have) but the doctors wanted to try. We are also seeing a Functional Medicine doctor, a Chinese Healer, and an Internist. (Just trying to think outside the box)
Half of Peyton’s symptoms DO NOT fit with the POTS diagnosis these are fainting while walking, exercising, skipping rope, swimming, washing her hands at a sink and while having a shower. The specialists cannot figure out why! She is a puzzle!
The Pediatric Heart Specialist says Peyton has a 60% chance of outgrowing the condition in her twenties, so we have a 5 to 10-year plan, but until then her quality of life is abysmal. She can’t go for a walk, ride a bus, go for coffee, walk at school, go to a dance, get her learners or driver’s license; pretty much do anything a “normal” 16-year-old can do. She will also be unable to hold down a full-time job, get a university education or join the Military (her dream).
Peyton is an amazing musical theatre actress, writes music and song lyrics. She has been in 3 movie productions. Sings like an angel and has two dreams in life. Peyton wants to become a Broadway Musical Actress and to become a Military Medic and eventually a surgeon but with this disease, she will be unable to achieve either of these dreams.
We have looked into every option, thinking outside the box to help her be independent, healthy and whole. The only option is a service dog that will be an early detector for her fainting incidents so she can position herself in a safe place and in the recovery position. These dogs are very expensive, the one she requires is close to $50,000.00 and takes 2 years to train. All agencies here in Canada are at capacity for training dogs. Multiple have told me that I should look to the U.S. for a service dog.
My husband and I both work but live paycheck to paycheck and the medical bills are already costing us an extra $500 to $700 per month and my coverage for additional health expenses has been depleted. I have looked into all grants, provincial and federal funding, social services and because I have a good job we do not qualify for any assistance.
Our house is not handicapped accessible at all. We need to redo her bedroom with new rounded furniture, a handicapped-accessible bathroom for her and a new shower. Our front steps need to be redone for wheelchair access. Special egress windows need to be put in to ensure that in the event of a fire she can escape by herself. She also requires a wheelchair for transporting to different places currently we have a loaner wheelchair for at school but require a permanent solution.
I am pleading with anyone who can help us! I am unable to do any of the work myself as I am disabled myself as a right arm amputee.
I am so worried that she is going to faint and crack her head open and end up with a brain injury. We need to get started immediately to ensure her safety!
Thank you for taking the time to read this and please keep our girl, Peyton in your thoughts and prayers!