Hi, my name is Vina. I am the girl behind the name of the company Vina Daisy, LLC, and Insta Balloon Creation. I was born in 2011 to Nazar Gozeh and Sana Sabir, first-generation Americans who came here over 25 years ago from Northern Iraq. My parents were excited to begin a new life in America and had many dreams about the peace and freedom they would be able to have. They both took classes and my dad even received a Master of Science in Electrical Engineering, allowing him to work a dream job with the State Department, defending his new country. Life was working out as planned until they started a family. My sister Lena, my brother Aza, and I came into the world and stole my parents’ hearts. But, due to serious health conditions in Lena and me, my mom and dad are now full-time parents, as life took an unexpected twist.
At first glance my sister and I may seem like ordinary girls. But if you looked at our genetics, you would see that we are extra special. You see, we have a genetic condition that caused us to have almost a hundred seizures a day for many years. We also have autism, intellectual delays, speech impairments, and behavioral and sensory challenges. This may sound traumatic—and believe me, it is. Anticonvulsant medications did not control our seizures, so it seemed that my family lived in the emergency room and specialists’ offices. My parents even knew the 911 dispatch members by name! As you can imagine, my parents felt helpless against the health issues both my sister and I faced, as doctor after doctor could not figure out what was wrong. Doctors prescribed many different medications desperately hoping to stop the seizures. Sometimes they asked our parents to choose one from the list! We traveled to Europe and Asia for genetic tests and family genome sequencing, but to no avail. No one could identify what was causing our seizures. Finally, in 2017, my neurologist at The Children's Hospital Colorado notified us that a research team in London discovered a mutation in the PROSC/PLPBP gene that will cause pyridoxine responsive epilepsy and that an active form of Vitamin B6 could control our seizures. For the first time in our lives, our seizures could be managed. We were in shock that of only 45 known cases of this gene mutation in the US at that time, our family had 2 in our household!
My family could now focus on helping my sister and me get the right therapies and support instead of wondering when the next seizure would be. We began receiving therapies such as physical therapy, occupational therapy, speech therapy, music therapy, equine therapy, and Applied Behavioral Analysis.
What I love most in life is having fun at home with my family, traveling, and decorating the house for holidays. I love decorating with balloons most of all, so we make a lot of balloon walls and garlands. My mom would usually be the one to tie all the balloons and spend hours putting together the garlands. After many sore fingers, she thought to herself, “There must be a better way!” She came up with a solution that would allow my sister and me to enjoy these balloon creations, but assembled in a fraction of the time and without the pain in her fingers. With the Vina Daisy balloon clips, a garland can be constructed in a little over 10 minutes! Now we can enjoy more time having fun at parties and less time decorating. Our ambidextrous design is also sensory-friendly, as it allows easy unhooking instead of loud popping when disassembling.
My life changed dramatically the day I was able to get on precise medicine for my condition. No longer would the hospital be my second home. These precise medicines gave me the freedom to live a more beautiful, fulfilling life, and for that I am forever thankful. It is because of this that Vina Daisy Insta Balloon Creations will be donating 5% of profits back to the program that has given me this freedom: Children’s Hospital Colorado Foundation. You can read more about their work with genetic testing and Precision Medicine here and here. Our goal is to one day start our own foundation that will help autistic and special needs children like me around the world. Our focus will be on war-torn countries, helping those with limited access to health services. As my life has been changed, I want to help change the lives of others. Your purchase helps us towards this goal.