Team Lexi

Our daughter Lexi has Postural Orthostatic Tachardia Syndrome and Ehlers Danlos Syndrome. She has been facing many challenges this past year but the biggest challenge right now is that the blood stays in her legs and feet and thereby presents lung, intestinal, heart and brain problems from lack of blood flow. In addition to multiple medications, she has to drink large volumes of fluids daily to increase her salt. She has a picc line for IV hydration daily.  Her doctors will not allow her to go to school so she has been attempting to take online classes the school year. Unfortunately many days she’s not well enough to accomplish what is required and has fallen way behind. This has all been very difficult and is no way for a thirteen year old to live.  All of her doctors say that the Mayo Clinic is the only place for her to get more advanced testing, more academic knowledge and the much needed treatment that will help with her recovery due to the severity of her symptoms.  At Mayo there is a three and a half week clinic where they do biofeedback, cognitive therapy, OT, PT, group therapy and two solid days of the most advanced testing for her cardiac issues. Unfortunately, she has two insurances that will not cover this program. We were told there are not discounts she can apply for her.  The deposit to get started is $38,000. We would sincere appreciate your prayers and financial contributions if you are able!  Thank you