Therapy For Levi
Donation protected
This is for our amazing son, Levi. He is 2 years 7 months. Levi was born at 35 weeks, he was 3 pounds 12 ounces. We were so excited to bring him home from NICU and introduce him to his brother, Luke and his new home. We thought that was the final step in the bumpy road. Our family was all together at last.
We noticed Levi was delayed and had some medical issues, but we were told it was likely due to him being a premie, and that he would improve over time. At his regular checkups, a lack of increase in his head circumference lead to the discovery of his microcephaly. Since this condition is very rare and most commonly associated as a symptom of something else, something larger, it went undiagnosed for what seemed like forever. After seeing many doctors for lots of different reasons, we finally had an answer. Levi has Renpenning syndrome. We were told that there were only about 60 people in the world to be known with this syndrome. His microcephaly, Renpenning syndrome, and recently diagnosed autism leads to his intellectual deficiency, developmental delays, sensory issues and behavioral challenges.
Levi has been in therapy since he was 6 months old, and although delayed, he does achieve his goals and continues to amaze us every day. As a family, we are learning sign language and other ways to communicate with Levi. While we enjoy the learning process together, Levi needs much more. He needs intense therapy to break through his sensory barriers and help him communicate successfully. The doctor recommends ABA therapy, which can offer him the intense therapy he needs. After fighting for my son with insurance, we finally got him approved, Yay! Our plan was to adjust the hours to meet what we could financially afford. Although we have applied for multiple financial assistance programs, we continue to be denied. Unknown to us, the approved hours cannot be altered and the out of pocket cost is almost $2000 a month. This all or nothing ultimatum leaves us in a tough position. We know how strong the need for this recommended therapy is, and how much Levi will benefit from it, but the financial cost is well beyond our means.
All donations will go toward this therapy. Anything unapplied will go toward all current and future medical bills. We have learned that Levi's path, while it might be bumpy, is a long journey that we are grateful to share as a family. Words cannot describe how amazed we are by the support, love, generosity and prayers of family, friends, and strangers. To know we are not alone in this gives us hope and encouragement. Our hearts are overwhelmed with gratitude.
We noticed Levi was delayed and had some medical issues, but we were told it was likely due to him being a premie, and that he would improve over time. At his regular checkups, a lack of increase in his head circumference lead to the discovery of his microcephaly. Since this condition is very rare and most commonly associated as a symptom of something else, something larger, it went undiagnosed for what seemed like forever. After seeing many doctors for lots of different reasons, we finally had an answer. Levi has Renpenning syndrome. We were told that there were only about 60 people in the world to be known with this syndrome. His microcephaly, Renpenning syndrome, and recently diagnosed autism leads to his intellectual deficiency, developmental delays, sensory issues and behavioral challenges.
Levi has been in therapy since he was 6 months old, and although delayed, he does achieve his goals and continues to amaze us every day. As a family, we are learning sign language and other ways to communicate with Levi. While we enjoy the learning process together, Levi needs much more. He needs intense therapy to break through his sensory barriers and help him communicate successfully. The doctor recommends ABA therapy, which can offer him the intense therapy he needs. After fighting for my son with insurance, we finally got him approved, Yay! Our plan was to adjust the hours to meet what we could financially afford. Although we have applied for multiple financial assistance programs, we continue to be denied. Unknown to us, the approved hours cannot be altered and the out of pocket cost is almost $2000 a month. This all or nothing ultimatum leaves us in a tough position. We know how strong the need for this recommended therapy is, and how much Levi will benefit from it, but the financial cost is well beyond our means.
All donations will go toward this therapy. Anything unapplied will go toward all current and future medical bills. We have learned that Levi's path, while it might be bumpy, is a long journey that we are grateful to share as a family. Words cannot describe how amazed we are by the support, love, generosity and prayers of family, friends, and strangers. To know we are not alone in this gives us hope and encouragement. Our hearts are overwhelmed with gratitude.
Organizer
Stacey and Ross Delahoussaye
Organizer
Pearland, TX