When Falesha was 37-weeks pregnant, her doctor found a few concerning birth defects in Cali that pointed to a rare syndrome called Pfeiffer Syndrome. From there, it was a flurry of preparation for her arrival.
In this episode, Falesha shares how much their lives have changed over the 16 months of her life, and the ways she became an expert of her daughter’s syndrome to help her have the best care possible.
Pfeiffer Syndrome is a fairly common in the world of rare diseases and syndromes.
There are many parents sharing their child’s journey with the syndrome on social media, so when Falesha and her husband Rome first found out about their daughter’s diagnosis, there was no shortage of families to look to.
But they noticed that none of the accounts featured families that looked like them. It was difficult to relate fully to them when not one child was a child of color. Inspired to add diversity and representation into that world, Falesha started a blog, Instagram account, and YouTube channel sharing their lives with other families.
On those outlets, she shares her daughter Cali proudly. Pfeiffer syndrome causes several craniofacial differences, and she is determined to show the world that she deserves to be accepted and loved, and advocates for facial diversity.
I love looking at her social media accounts and blog because it is so clear that she and Rome are incredibly proud of their daughter.
And like many of us, she’s learned so much from Cali.
“I'm a totally different person than I was before I had her.”
She told me that she wishes that in the early days after the diagnosis that she could have had a glimpse into what their lives would be like a year later and how much they would both be thriving. I’ve often wished that too! How valuable the perspective would be, and yet, Falesha admitted that she hated when people would reassure her that things would get better. It was irritating when she wanted to feel the gravity of the situation and be upset about it. And really, it’s probably a healthy thing to allow ourselves all the emotions that come along with the diagnosis, even with all its discomforts.
She said she wishes she could go back and tell herself,
“You’re gonna get through it. You have all the tools in you to survive and make it as a medical mom.”
I love this! Honestly, hearing that even now, further into our journey, is super reassuring. It’s so empowering to remember that the tools we need are within us.