Our Little guy is ONE! In honor of his first birthday we want to help raise money for the American Cleft Palate Craniofacial Association. Tory, Wynn and I are each going to commit to 60 miles for the month of July, by way of walking, running, scootering or biking:) There is a huge gap in care due to financial burden. The least we can do try and help raise awareness and funds for those in need.
For those of you who don't know Wright's story, it started when I was 12 weeks pregnant. I went in for a routine ultrasound, alone, since I was covid positive. After years of fertility treatments and IVF, the only question on my mind was if there was a heartbeat present or not. The pregnancy had been confirmed by ultrasound twice before now so I felt confident in doing it alone. The radiologist entered the room and stood in the doorway and I immediately knew something was off. She began by saying, "There is a heartbeat BUT the baby has a bilateral cleft lip and cleft palate". She proceeded to pull out the radiology text book in which she wrote the chapter on clefts, giving me statistics on genetic disorders associated and repair pictures. My world went black. With tears flowing, I text Tory the news while I waited for the maternal fetal medicine geneticist to come and talk with me about next steps. Two days after Christmas I had a biopsy taken of my placenta to rule out genetic links to cleft associated disorders. Risky, absolutely. Necessary, for us, yes. We wanted more information to make better informed decisions moving forward. Thankfully no cleft associated genetic disorders were detected. His cleft was just a spontaneous abnormality as far as they could tell. Fast forward to delivery and it was quite the shock again when we discovered that his palate was actually completely intact! After monthly ultrasounds and scans, some even 3D, we were completely stunned to learn there wasn't palate involvement.
1 in 700 live births in the US are affected by cleft and craniofacial differences. Who knew? Not us! It was never on our radar. We are so grateful for options, access to care and funds to get the care we need. A lot of families struggle to get the help they need.
Please help us in supporting the American Cleft Palate Craniofacial Association during National Cleft and Craniofacial Awareness Month. 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.
