cynditk Posted January 10, 2016 Report Share Posted January 10, 2016 (edited) I am interested in putting together a 3- 5 day retreat for young adults and teens with Lyme/PANS. I have been inspired by another mom on a Lyme forum- a Facebook group called Parents of Teens with Lyme- who put together this type of retreat for teens and young adults and it was wildly successful. Here is a link to the FB group: https://www.facebook.com/groups/630704753740290/?hc_location=ufi The retreat was originally designed for people with POTS and EDS and many of the kids saw the same doctor. Moms were at the retreat to supervise and I would do the same thing. A little about us: My son Lucas is now 20. He has been sick for 8 years, has been dx with (in this order)- CVID/immune deficiency, PANS, Lyme/CO's. He was housebound for 4 years, in intensive treatment for 2 and slowly improving and now getting back out into the community. I used to be a yoga teacher/therapist and recently retired to take care of him full time. We live in greater Seattle and have a team of docs working with us. My son is very extroverted and the thing that has been hardest for him has been the isolation of this illness. He has many connections online, but few in person. I think this is the case for so many of our kids. wouldn't it be great if we could put together a 3-5 day retreat so they could hang out together? I have experience planning retreats and based on the other parents' feedback I think I could put something together at a local retreat center that would be financially reasonable. Anyone else interested? Also please spread the word to other people you think might be interested. best, Cyndi Kershner Edited January 10, 2016 by cynditk Link to comment Share on other sites More sharing options...
HopeinHIM Posted January 20, 2016 Report Share Posted January 20, 2016 That's a beautiful idea but we are on East Coast! I love the idea for sure! Wouldn't it be nice if a millionaire provided a beautiful warm weather 1 week retreat for our kids and parents of course I think I will pray for this right now. LOL Link to comment Share on other sites More sharing options...
trintiybella Posted January 20, 2016 Report Share Posted January 20, 2016 That sounds awesome. I am on the East Coast too, but I would consider traveling! Link to comment Share on other sites More sharing options...
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