Mom Kari gives us a glimpse into the world of her daughter Sloan who is profoundly deaf-blind and is tough as nails. Sloan has a clinical diagnosis of CHARGE syndrome, a rare disorder affecting various parts of the body.
In this episode, Kari shares what life is like with the dual sensory loss, her birth story, and how her dreams for her daughter have shifted in meaningful ways.
Kari and Sloan’s GoFundMe: https://www.gofundme.com/f/for-kari-and-sloan
Answer August’s question of the month: https://therarelifepodcast.com/
July responses to question of the month: https://therarelifepodcast.com/q-of-the-month/appointment-day-hacks
Sensory swing: https://amzn.to/3kbb7EE
Check out the website for pictures, comments, the full transcript, and more. https://therarelifepodcast.com/show-notes/ep-10-story-sloan
TRANSCRIPT:
Madeline Cheney
A quick update before we get to Episode 10. I have a message to read from Kari Harbath who I will chat with in this episode: "I'm saddened to say Aaron, Sloan's dad, passed away on June 2. This loss has been devastating for our family. And as you'll hear throughout the episode, Aaron's claim to fame will always be his amazing entry into fatherhood. Sloan is lucky to call him her dad. He was an extremely dedicated and loving father and we all love and miss him dearly." To Kari, Aaron, and Sloane, I'm shattered for your loss and in awe at the fierce love that you have for each other. You can support Kari and Sloan monetarily by donating to their GoFundMe. The link is in the show notes. And now let's continue on to the episode.
Kari  0:00
Nothing has been very normal around here! But that's cool. It's cool. What is normal, right?
Madeline Cheney  0:04
Hi! You're listening to Episode 10 of The Rare Life. I'm your host Madeline Cheney. And now that we are in August, we have a new question of the month. Thank you so much for everyone who contributed to July's question of the month. To see those answers, head over to the website, therarelifepodcast.com, there will be a link to that in the show notes. This month's question is: what has helped you follow through on advice from your child's therapist and medical team? One more time: what has helped you follow through on advice from your child's therapist and medical team? I love this question. It goes along very well with Kari's special topic episode which comes out next week. So head on over to answer that question. I'd love to hear your input. Today you get to listen in on my conversation with mom Kari. She is mother to Sloan, who just turned one. She has CHARGE syndrome, which is an acronym for the different birth defects that often comes along with that. In this episode, we mostly talk about Sloan's profound deaf-blindness, which is the most life altering birth defect that she has. We also talk about her birth story, and how her dreams for her daughter has shifted in awesome ways. And as a caution, her birth story does contain possible triggers. So proceed with caution. We met at a deafblindness parent conference. It was really great to connect with with her and her husband, and we even found out we have the same PT for our children....