Krysta is now 21 and we are still on this difficult journey that started when she was 19. It started in 2024 when the entire family caught Covid (technically, she never tested positive, but the rest of us did). Every time she stood up, she was dizzy. She puked A LOT from the dizzy spells. At first the doctors (hospital and primary care) attributed it to a condition they call "Long Covid" where symptoms persist for months after the virus has passed. She was vaccinate and had the boosters (as were we all). After a few months, she started having episodes where she would seem to go catatonic for short periods of time. I started taking her to the ER and the doctor for each episode until they took me seriously. We had our first neurology visit in Nov 2024. After rigorous testing, the determined that she has frontal lobe seizures during these episodes, however he believed the onset of these was triggered by a cardiological condition. We were referred to a cardiologist as well as Barrow Neurological for a second opinion. The cardiologist suggested that she may have a condition called POTS (Postural Orthostatic Tachycardia Syndrome) that could be the trigger for these "seizures." It took a while to get to see the second neurologist, but we finally got in, in May 2024. This doctor was suspect of the diagnosis of seizures, but jumped right onto the POTS and suggested that she may also have a condition called EDS (Ehlers-Danlos Syndrome) which is very commonly associated with POTS and suggested we do some testing for POTS and see a rheumatologist to diagnose the EDS. They did what is called a tilt table test to check for symptoms of POTS and within 10 minutes of the start of the test, her heart rate has escalated to 152bpm. She was well above the criteria to qualify the diagnosis. The rheumatologist also confirmed that she has a hypermobility condition that "could" be EDS, but without genetic testing of her and the family, he can't 100% confirm, but he was comfortable enough listing it as a condition on her paperwork. The genetic testing is not covered by insurance and even just the one test is over $200. So now, to address these "seizures" we were referred to an epilepsy specialist at Barrow. We spent last week at the hospital hooked up to monitors in the EMU (Epilepsy Monitoring Unit) at St. Joseph's in Phoenix. The found no sign of seizures and now are attributing these catatonic-like episodes to her POTS condition. It seems this may be a lifelong condition that can be managed, however not cured. In order to get around, we were gifted a mobility chair to take with us to the stores and just to get around in general when she doesn't have access to walls to balance herself and furniture to be able to sit on when these episodes occur. Currently, she has anywhere from 3 to 5 episodes a day, varying between 30 seconds to 5+ minutes at a time. During these episodes, she just freezes in whatever position she is in, standing or sitting, and either stares blankly with her pupils dilated or closes her eyes like she is asleep. This of course could be dangerous if she is left alone for many reasons. She could fall and hit her head and no one would ever know or, if she's in public, someone could take advantage of her vulnerable state. She has moved in with me (her mother) permanently. We have been blessed with the help of so many, but we still need the funds to install a lift into my vehicle for her mobility chair, the funds for the genetic testing, as well as gas and vehicle maintenance for continuous trips to the doctor in Phoenix. Our priority right now is the lift for the van which I was quoted at $4038.32. She has been handling the hospital visits and testing like a trooper and with some semblance of a sense of humor. My heart hurts seeing her go through this She is my heart. She has been so full of life from day one and this is sucking that out of her. I need to find any way to continue to keep her smiling. I am now stretching beyond my resources. We have been blessed with the help of some friends who gifted us 2 wheelchairs. One standard one and one electric one. However, the costs associated with making the modifications to my house and car to accommodate these mobility devices as well as trying to set up other "quality of life" accommodations are draining my family. In addition, we have been traveling back and forth to Phoenix from Chandler regularly which we all know with gas prices these days is draining. My car is old and needs some minor repairs to continue to make these trips successfully. I am doing the best I can, but it doesn't seem to be enough, but a little bit of financial support would definitely relieve some of the stressors on both Krysta and myself. I thank anyone willing to help out by either donating or sharing this fundraiser. Here is a short video of her expression after testing her new chair. The excitement of her being able to get around again makes the cost of everything worth it. Her smile is electrifying and I want to be able to see her enjoy everything life has to offer. Accepting our challenges is only one step towards her future.
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