Get Caelyn to the POTS Clinic in Dallas
Organized by: Valerie Vandermeer
Two and a half years ago Caelyn went from being an incredibly active and involved teen to being bedridden most of the time. Due to a little known and difficult to diagnose disease called Dysautonomia POTS, she is unable to attend school and has difficulty with the most basic tasks. She is in pain every day, and if she chooses to engage in any actitivies, or even just spend time with her friends, she ends up in bed for days recovering and often gets sick for weeks due to her compromised immune system.
There are very few treatments available for this under-researched disease. The usual course for managing the migraines, muscle pains, stomach pains, and other debilitating symptoms is not an option because Caelyn is hyper-reactive to medications. The few protocols that we've found to offer some relief, including nutritional support, are not covered by insurance.
We just learned about a clinic in Dallas that offers a two week intensive for three hours per day in bio-feedback and other interventions that can help Caelyn learn to regulate her nervous system. There is excellent feedback from other families about this treatment and many stories of teens recovering enough to resume at least some of their activities. Both her Cardiologist and Primary Care Provider agree that this program is a good fit for Caelyn.
The program is not covered by insurance and costs $5,000. All funds raised here will go directly toward paying that expense. If we exceed the goal, additional funds will be used to pay for airfare and hotel expenses for the two weeks. We are grateful for any small amount you can give to help meet this need.
More information about Dysautonomia POTS is here: http://www.dinet.org/index.php/information-resources/pots-place/pots-overview