So I probably shouldn’t, but I feel that I need to apologize in advance for my lengthy & very “rambling” blog post here. But hey, how else are you supposed to get to know me? Right? I ramble…. And another thing to know about me. No matter who you are, I will be me. Those two people in the photo on the left with me and my nautical bow dress definitely LOVE that about me! The feeling is mutual if I do say so myself, and I’m confident in my feelings of how they feel about me. Now… with that being said, one thing I consider myself is super lucky to have a lot of very good friends. A cute little curly headed jewish girl with a southern y’all-drawl from Montgomery, AL…. No, it does not sound easy, but has worked out ok for me, I think. Being that we had a pretty small jewish community in Montgomery, Alabama (surprise!), our parents provided my sister and I with opportunities to get away here and there to expand our list of friends – something that has had a big impact on who we both are today. We spent amazing summers at a beautiful & special place called Camp Barney Medintz in Cleveland, GA; we went to youth group events across the southeast; trips to Israel; all where we made amazing friends for life. What is the point i’m trying to make here?! Amongst these lifelong friends, some of these friends stick pretty strong. The friendship never fades, and the friendship is like we never missed a beat anytime we are together. Hopefully you also have at least one friend like that and know that feeling. Two of these friends that really stuck are my girls Courtney and Carlyn (as mentioned above). We have been friends for over 20 years of our lives. While Carlyn is a super powerful force in the world (there will most definitely be a whole other post about her for sure!), this story I am trying to get to is about Courtney and her 2 year old son, Tanner.
Just about 6 months after Tanner was born, he was diagnosed with CDKL5, a rare disease that has become more common in recent years. It has a early onset with young children and is linked to the X chromosome, causing a lack of development in the brain. He has a LOT of seizures and can’t function the same way that most other children his age can. They’ve tried many different treatments including CBD & Hemp oils, along with a special diet, to try to find the right combination of effectiveness to cut down on the seizures, and to allow Tanner’s personality to be present as much as possible.
People don’t plan on being special needs parents, but life usually gives you things that you are built for. Maybe it’s your purpose in life, and all along you never knew. Courtney was built to be an amazing mom… she is super-mom to a special child, something you just can not plan on.
Now, Courtney and her husband Brian Froy (another amazing person with super strength) are on a special journey through their lives to teach us about this highly unknown disease, as they try to help find a cure for CDKL5.
Later this month, Courtney & Brian will be hosting an event in Atlanta, the 2nd annual Toasting Tanner event, raising money that will go towards CDKL5 research. I urge you to visit Courtney’s blog to learn more about this scary disease, and if you can please make any small donation that you can, or if you are in Atlanta, go to the event! Looks to be a fun time with some fun people where you can learn something about life and love. I unfortunately will not be able to attend, but I am happy to have shared my donation to this worthy cause through design… when my Courtney calls, I’m happy to deliver.