The story of Brendan
Brendan was born on 3/21/2016. He weighed 7.7 pounds and measured 20.5 inches long. He looked perfect, or at least normal to what we have seen for a typical born baby. We thought everything was great, but time seemed to stand still for my husband and me. The NICU doctor came to our room to inform us that our little boy had a lot of “red flags.” He’s got bit jaundice, his oxygen level was low, and he struggled with sucking, breathing, and swallowing. They had to put in a feeding tube. They did more lab tests on him and found he had holes in his heart, undescended testicles, and a spot on his kidney. Our baby stayed in NICU for a good few weeks. After a few months of appointments, the pediatric cardiologist ruled out that the heart murmur and his holes had naturally closed. The nephrologists’ checked him out and ruled out the spot on his kidney. These eased some of our worries. But as the months went by, we noticed Brendan was not meeting his developmental milestones. We made an appointment and received Early Intervention Services. Our little boy was initially diagnosed with global development and speech delay, but our pediatrician referred us to a Geneticist for more tests and studies. In September 2019, Brendan was diagnosed with this rare genetic disorder called FOXP1 Syndrome. This syndrome causes a child to have global developmental delay (severe in speech and language) and learning issues with or without features of autism. Our Geneticist told us that Brendan was his first case. Since this is a rare genetic disorder, we keep doing a lot of research to be able for us to understand and learn more about the diagnosis. And we are thankful for we have found some support groups especially the International Foxp1 Foundation, www.foxp1.org With all the evaluations and recommendations by different specialists, which include his Developmental and Behavioral Pediatrician, Brendan started ABA Therapy before he went for Pre-k. He did Speech and Occupational therapies once a week. These therapies really helped and we see some progress. Now he goes to school in Kindergarten, where he can still get sessions with Speech, Occupation and APE. At very young age, our little boy already had few surgeries. These include both of his eyes for eye muscle surgery when he just turned a year old because his right eye was not fully developed when he was born. Orchiopexy for his undescended testicle, and hernia surgery. Tympanostomy tube placement, adenoidectomy and tonsillectomy. Brendan is such a happy little boy, adventurous and he never fails to make us all happy. His journey in life won’t be that easy but we believe he is a fighter, a warrior and can do everything because he has a family who will always be there to give him all the support, care and love he needs. We believe in the saying that “Children with special needs are not sent to special parents, they make parents special.”