As most of you know Kylar and Dakota have a very rare medical condition called Smith Lemli Opitz syndrome (SLOS) which means they do not make cholesterol in their bodies. Cholesterol is essential in order to function daily. The boys are affected with the syndrome by having feeding tubes, seizures, developmentally delayed, autism, and severe behaviors to not ony theirselves, but to both Rob and I. Every other year we want to go to so that we can get the newest medical information that has been done with research. Smith Lemli Opitz is a genetic condition where both parents have time be carriers in order to have a 25% or 1 in 4 chance every pregnancy will result in the child having SLOS. This years past conference was in Washington state which means in 2025 it will be somewhere in the mid west. The mid west and east coast are thr easiest for us to travel to as we have to drive to our destination. We are raising money for gas, traveling costs, hotel stay for at least 3 nights and 2 days and the cost to attend the conference as well as food. The money raised will go for these costs as it is expensive trip. The last conference we attended was prior to Covid which was on the east coast. Meeting with other families that deal with this same condition helps us feel not so isolated for a brief time. Thanks in advance for helping in our trip.
