Case Family Story
Hope for Tomorrow
My name is Renee Case and my husband, Josh, and I have two adopted special needs kids. Jacoby is 6 and Ivy is 4. Both of our kids have rare genetic disorders. We adopted Jacoby not knowing any diagnoses. After a few months of noticing some developmental delays, we decided to pursue testing. When a geneticist was recommended, we chose to check out CHC, mostly because they were relatively “local” to us and we didn’t have to travel to Riley. Dr. Z was absolutely amazing! She diagnosed Jacoby with a rare condition called Chromosome 16p13.11 Microdeletion Syndrome. The staff helped us realize that there were resources out there for Jacoby and we were on the road to getting Jacoby the best care possible!
Fast forward a few years and we were ready to adopt again. Only this time we specifically wanted a special needs child. After a bit of waiting, we found out about Ivy. She was in Texas and we knew she had an extremely rare condition called Trisomy 9 Mosaic, along with some other birth defects related to her syndrome. I immediately called CHC and Dr. Z very graciously walked me through what we knew medically. It wasn’t a lot to go off of, especially since Ivy’s condition is so rare. There are only about 350-400 known cases of T9M in the world. We felt confident and reassured in what Dr. Z explained to us and here we are almost four years later, with the most precious daughter!
CHC opened their arms up to us when we brought Ivy home, making us feel like a priority to get Ivy in ASAP. We had a lot of unknowns at first and we all worked together to make sure we knew as much as we could about Ivy’s condition.
It’s hard to imagine that we’ve been coming to CHC for almost six years now. In the beginning, you go frequently, so milestones, therapy, testing, etc. can be documented and information collected for each disorder. And then as your kids get older, the appointments become further apart. With most of our many specialists, it’s a welcomed situation when you don’t have to go as often; however, there are a few that you hate going so long in between. CHC is one of those! I bring the kids in once a year now and each time it’s crazy to think about how big they have gotten, which milestones they are finally meeting and how life isn’t as complicated as it was when they were each little.
I am forever grateful for the love and compassion the ladies at CHC have always shown us. They are one of our favorite teams that we look forward to seeing each March. Without them, and Dr. Z, we wouldn’t have the final puzzle piece to our family. I don’t know if I ever told her, but it was all because of Dr. Z’s encouragement that we felt we could handle a child with the complex needs that Ivy has. And we have! Watch out...we are in it for the long haul!!