This is my goddaughter Karlee. She’s 17 months old and was recently diagnosed with Kleefstra syndrome, a very rare genetic condition that affects how her brain and body develop. This means she faces delayed milestones like walking, limited speech, and the possibility of medical challenges such as heart, kidney, and breathing issues. Karlee’s current symptoms include a heart condition and regression in her speech, and she has not yet met some developmental milestones. This diagnosis is scary and something no parent is ever prepared for. We were told she might never speak or know how to express herself, but what this diagnosis doesn’t change is who Karlee is. She is still my beautiful, bright, happy baby. She smiles through it all. She is strong in ways I never imagined, and she teaches me every single day what resilience and pure joy truly look like. Her journey may look different than we expected, but it is filled with love, hope, and a whole lot of strength from our family and friends. She is a blessing, a light, a warrior. We love her more than words can ever say, and as long as I breathe, she will have someone endlessly proud of her, cheering her on every step of the way. Kleefstra syndrome is so rare that many providers we’ve spoken to have never heard of it before. It was only discovered in recent years, and there’s little to no awareness. We’re currently looking into research programs and clinics that can do more in-depth testing, but haven’t had the best luck. Let this also be a reminder to always advocate for our babies, always follow your heart, and keep pushing for those answers. Thank you everyone for the support. All donations will go towards my goddaughter's journey for her medical expenses, therapies, and specialists in hopes to one day finding a cure. God bless everyone.
Organizer and beneficiary
Andrea Zepeda
Beneficiary






