Hi there! For those that don’t know us, we’re the Bacas. We have 3 beautiful daughters, Graycee, Saidee and Paislee or as we call her, Button, because she’s cute as a button. Saidee and Paislee were adopted on 12/4/2024. In 2024 we learned Paislee has a very rare genetic condition called Chung Jansen Syndrome. It is actually a deletion in the PHIP gene in her DNA. She has 2 deleted genes but at this time we only know what 1 is. There is an opportunity for us at Boston Children’s Hospital where the doctors who founded her genetic condition are hosting a convention for families with Ching Jasen syndrome. The convention is July 23-25 and we have gone through the appropriate insurance channels to get most of this covered with some still out of pocket medical expenses. Paislee has a 1:1 appt with Dr. Chung on 8/3 which again- some is covered and some isn’t!  These appointments are answered prayers for us to hopefully understand her condition more and help be apart of research for other families. When Paislee was diagnosed she was # 443 in the WOLRD. Now they are saying there are about 700 people world wide with this diagnosis as of early 2026. There is very little knowledge, education, or resources for kids and families with CJS. We will need to stay in Boston for 13 days. We will arrive for the convention on 7/22 so we can rest and sleep before day #1 of the convention which is on 7/23. We have asked Boston Children’s Hopsital if they can move Paislees appt with Dr. Chung closer to the convention but she only does clinic the first Monday of the month. So, we’ll be there 13 whole days. 🫣😅

With full transparency, before you donate, while we are in our down time in Boston we plan to take our girls to see the Statue of Liberty in NYC which is only 4 hours from Boston. We are so grateful to everyone who donates for their support in getting Button to Boston. But, if it makes you uncomfortable that we will be exploring while we are waiting for the appt with Dr. Chung, we understand if you don’t donate. We don’t want anyone to feel taken advantage of because of our adventures in our down time.

We have saved $3000 for this trip ourselves. Our goal is $7000 from this fundraiser. We are expecting between the flights, food, lodging, rental van and out of pocket medical appointment costs this trip costing us $10,000. Please share this with your friends and family and help us reach Boston in July. Pray for Paislee and the other kiddos with CJS. We need more research, answers and knowledge to better help our children! Thank you for reading this far and if you donate  THANK YOU. God bless you all!