Hayden was born in March of 2024 with an incomplete bilateral cleft lip and complete cleft palate 🩵 We found out midway through our pregnancy with him (which is another story for another time). Despite clefts being the most common birth defect (1 in 700!), I had little to no knowledge about them prior to this.
Since Hayden's diagnosis, we've had a crash course in cleft parenting, which has given us a huge amount of empathy for all of the other families and kiddos going through the same process. From worries about feeding and specialty medical bottles 🍼 to planning and stressing over surgery plans and medical appointments 🩺 there is so much that goes into cleft care.
Beyond the immediate needs during infancy, there are so many challenges we have yet to face with our little dude. Cleft care isn't complete when his lip is repaired or even when his palate is repaired - we have a long road of more surgeries (including a bone graft - ouch 🤕), speech therapy, and various other things to work through until he's 18 at the very least.
American Cleft Palate Craniofacial Association - ACPA does so much for families like ours and kiddos like Hayden in big ways 💫 From micro level impact in direct work with individuals to macro level advocacy for policy and law-related changes, they do it all. The work they do is vital, so please consider joining me in supporting them! 🪽
My goal is $100 and I will be participating in their 60 mile challenge through July 🔥
Join me in supporting the American Cleft Palate Craniofacial Association during National Cleft and Craniofacial Awareness Month. I'll be participating in their 60 mile run/walk challenge during July to raise awareness and support for ACPA. Your donation will help provide funding for ACPA programs and services that support patients affected by cleft and craniofacial conditions, their families, and the professionals who provide their care.
With your help, ACPA can:
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Ensure college scholarships are available to students born with cleft and craniofacial conditions for years to come. At the current rate of funding the Randall/LaRossa Fund will run out in seven years.
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Update and expand family resources to include additional diagnosis and treatment information and translate them into additional languages to ensure all patients and families have access to the information they need.
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Expand professional scholarships to include additional disciplines to ensure all cleft and craniofacial professionals have access to the latest research and clinical innovations, and the opportunity to attend ACPA’s Annual Meeting which provides accredited continuing education.
