Hi Lovelies! I want you all to meet my precious son Leo! Leo was diagnosed with a super rare chromosome disorder called Tetrasomy 18p. There’s a wide spectrum of symptoms and traits for Tet18p, but here’s Leo’s experience. He was born full term but had to stay in the NICU for one month. He was not able to feed on his own and had a nose tube for his formula. Leo often vomited most of his formula so the challenge was for him to keep down his food and pass the carseat test. He failed the carseat test multiple times because his oxygen level would drop. once he finally was able to come home, feeding was at least a one hour process. He has low muscle tone, including in his mouth so creating a close suction was difficult and tiring for him. Leo had many physical and development delays and meeting those milestones took a bit longer. Early Start Intervention through the regional center was a great help in working with Leo on physical therapy, occupational therapy, speech therapy, and general therapy. He also did pediatric horse therapy which helped strengthen his core, balance, and much more! Even though Leo has low muscle tone, he is very strong. He is still working on his danger awareness since he has very little to none right now, and he has a super high tolerance for pain so sometimes he will itch his eczema toll he bleeds and not even know.
Today, Leo is able to eat all his favorite foods (like pizza, chicken, popcorn, pasta, fish, ham & cheese croissants, yogurt, grapes, etc.), speak multiple words, and maneuver around the playground safely all by himself, and navigate an ipad independently too! Leo is thriving and constantly learning and growing each day! Leo is a social butterfly and is always the first person to hi say to anyone and runs to give hugs, blow kissed and high fives! He loves music and dancing and playing with his shadow and reflection. Some of Leos favorite characters are Spiderman, Blippi, Peppa Pig, Cocomelon, Santa, Mickey Mouse, and Maui from Moana! Leo still needs help with some daily life activities dressing, potty training, and hygiene (brushing teeth, bathing, etc.).
Leo has such a bright happy personality and is always smiling. His biggest quality is his kind heart and empathy. He can read expressions and understand if someone if feeling bad or sad, he will come over and sit next to you and lean his head on you to try to comfort you. Leo will share and offer his snacks and toys with you, and will always invite you to sit with him and play with him. Leo has a great big imagination and will imitate a lot of videos he sees. He loves being around people and will smile and see the joy in everything!!
I’m so lucky to be Leo’s mother. Leo is such an amazing boy, son, little brother, friend! Leo inspires me everyday to be the best person I can be. When i see him struggle to do a task, struggle trying to communicate his thoughts and feelings, etc.; it teaches me patience and understanding. Not everyone have natural abilities to do what is “instinctual” or ”natural” and sometimes people have to really learn certain skills and comprehensions that isnt natural to them. Leo is such an amazing fighter and brave human being. He doesn’t see himself as different from anyone else. He is doing his best and that is more than enough! I’m so humbled by Leo and I’m very happy to share his journey and life experience with you. I hope Leo inspires and gives you hope with whatever difficulties, challenges, and obstacles you face in life.