As many of you know, Talynn has BOS . There are fewer than 60 in the WORLD! People living with BOS have daily struggles and can turn from completely happy/healthy to sick/miserable in minutes. If it wasn’t for advice from other families living with BOS I am not sure where we would be today. We have been extremely blessed to meet some of these AMAZING families in person. These meet-ups are heartfelt , emotional, loving, caring, and a feeling that I only get when around other families who live my daily life! We would chat about the good and the bad, different treatment plans, equipment (sometimes try out others), different experiences, and how to better our child’s life; this information is worth millions! Our BOS Families mean the world to us! They can relate, finish statements , provide advice , when the medical world cannot. They are family to us!
In August, the BOS Foundation is hosting the first official BOS meet-up in Philadelphia. This meet-up will give other families the opportunity to have the same experience we had, but on a much larger scale. Families will unite to celebrate our children and to share information on the best ways to care for them and thrive as very unique families. We will also have the chance to meet a few of the medical experts who research BOS. This is an amazing opportunity to raise awareness of BOS among our medical community, motivate BOS research, and get answers on the best course of treatment for Talynn and all of her BOS brothers and sisters.
I have a personal goal of raising at least $500 to help pay for this event.
Could you help me meet this goal? Your funds will help pay for the cost of the venue, food, medical advisory board travel, face painter, and goody bags for the families.
Click here to make a donation to The BOS Foundation via check or Paypal.
Click here to purchase a BOS Awareness T-Shirts through our Booster Fundraiser. The sale ends June 30!
Thank you so much for your support for Talynn and all patients with BOS!