Mom goes viral spreading awareness about baby’s rare diagnosis on TikTok
Madeline Taul
By Joyce Ogirri
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LOUISVILLE, Kentucky (WLKY) — Madeline Taul, a Louisville mother, is capturing hearts worldwide as she shares her inspiring journey as the parent of a child with Bosma arhinia microphthalmia syndrome, a rare genetic disorder affecting fewer than 100 reported cases worldwide.
BAM causes the congenital absence of the nose and eye-related issues. Vincent has already undergone multiple surgeries and spent significant time in the neonatal intensive care unit.
“It was really shocking and upsetting at first,” Madeline said, “but now I realize how much of a blessing it is.”
Choosing to embrace her new reality, Madeline began sharing their journey on TikTok.
A video posted on May 5 about Vincent’s sleep routine catapulted them into the viral spotlight, garnering nearly two million views.
The platform has allowed her to find support and inspire others facing similar challenges.
“It’s funny to see everyone’s comments and questions about him, and I love answering them,” Madeline said. “It has meant a lot to me to connect with people who are like me and Vincent.”
Through her TikTok channel, Madeline updates followers a few times a week by offering a glimpse into their daily lives, while raising awareness about medical complexities.
On Vincent’s first birthday, the family celebrated how far they’ve come while setting their sights on his bright future.
“I hope that he’s able to grow, meet his milestones, and live a normal life,” Madeline said, as she continues to inspire and connect with families.
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