Everyday, I hear parents talking about how their child did at the t-ball game or dance recital, I look at photos of children interacting with one another , these everyday life interactions with children are the norm. Medically fragile children don’t have groups they “fit in”, especially ones living with Bohring-Opitz Syndrome. There are fewer than 60 cases in the world, even the statement 1 in a billon doesn’t apply! Parents and children with BOS also need the interaction with one another. We need advice and support from someone living our day to day life. Questions like “when did your child start potty training” or “how did you get her to eat her veggies” don’t really apply to our kiddos, which is why interacting with other BOS parents is so important.
Back in August 2015 , The BOS Foundation was established. One of the goals was to have an annual BOS meet-up. On August 13, 2016, in Pennsylvania, the first meet up will be held! This meet-up will give families the opportunity to experience others like their very own. They will unite to celebrate BOS children and to share information on the best ways to care for them and thrive as very unique families. They will also have the chance to meet a few of the medical experts who research BOS. This is a fantastic opportunity to raise awareness of BOS among the medical community, motivate BOS research, and get answers on the best course of treatment for Talynn and children like her.
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. Talynn has agreed to send a personalized thank you card to everyone who contributes by June 30.
Here are some ways you can help:
To donate to the BOS Foundation via PayPal or check, please visit:
Purchase a BOS Awareness T-Shirts and show your support. The sale ends June 30!
Thank you so much for giving BOS families the opportunity to join together and fit in!