Hi, we are the Barahona family from Atlanta GA. Our precious daughter is Camila Sophia. She was born with a rare disorder called CDKL5 deficiency disorder which is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene.
This disorder can manifest in a broad range of clinical symptoms and severity. Camila started manifesting symptoms when she was 10 days old. After the initial diagnosis of “epilepsy” we waited 4 long months to receive the genetic test results, that’s when we officially received her CDKL5 diagnosis. For my husband and I, it was a huge hit. We were first time parents, we did not know what was going on with our baby, lots of unanswered questions, and at the same time the only thing we could think about was how we can help our little girl.
We found strength in our faith and could only keep on fighting for our baby, our only goal was, and still is, to give her the best life we can possibly give her.
If you met Camila, you would know how sweet and loving she is. She has a strong personality but she’ll melt your heart with her dreamy eyes. She’s truly a a gift from God. Camila has 3 sisters. She loves to play with them, they’re the ones that bring out her sass! She loves outdoors and she’s definitely a daddy’s girl! Camila is non-ambulatory.
We would love to be able to provide her with mobility equipment for her to develop her walking skills. Financially is hard to cover these type of equipments because their cost is high and the insurance won’t cover for most of them. Thank you for considering to shout love for our family.
Support this family every month through the Shout Your Story Monthly T-shirt Subscription. You will automatically receive a new t-shirt each month and save $3 off the regular purchase price. Your subscription size can be changed at any time.
