Helping Aviana

UPDATE: Aviana's results are in March 27th at 4pm our whole world shattered. Aviana was diagnosed with Smith Magenis Syndrome. I must have filled the entire Hudson River with my tears. At first I was heartbroken, then that turned into anger, then into why and now I'm at acceptance. Our little girl HAS this syndrome, it DOES NOT have her. There is no cure for this just treatment. We will have to work every single day at this and it isn't going to be easy. A 1 in 25,000 chance and this happened to 2 of the most unluckiest people. But then I thought last night, we ARE the 2 most luckiest people because we were blessed with this angle who is teaching us the true meaning of unconditional love. Not only our love for her but Steven and I's love for each other. When I was pregnant I thought I was going to be the best teacher to this little girl and it turns out I was so wrong. SHE has become the teacher and me the student. She has and is going to make me the best mommy ever and she is going to teach me a lot about patients, love, gratitude and faith. I'm scared to embark on this lifetime journey with her but I'm so ready and willing. We've already been on this journey for nearly 3 years, we just had no idea. Now we have the proper resources and care, treatment, therapies etc for her. We want to THANK every single person who has donated to her Go Fund Me because without you we wouldn't have been able to do this test that she so needed. Please continue to pray for us and for her and her siblings. We have the best support system in our family and friends and for this we thank you! #sms #smithmagenissyndrome #ilovesomeonewithsms ORIGINAL STORY: Hello everyone and thank you for taking the time to read about our sweet girl Aviana! When Aviana was born she was pulled out in a rough manner causing Torticollis (twisting of the neck muscles). Because of this (we had no idea until she was 4 months) she was only able to sleep on one side of her head causing Plageocephaly. When she was 4 months old her head was so flat that she needed to wear a helmet (which insurance did not cover and it was pretty expensive). Due to that and lack of knowledge from those doctors, her ears were never aligned leading to speech delay (an amazing cranial specialist told us this). She is nearing 3 years old and can only say Mom and Hi. Along with no speech she is also developmentally delayed. She wasn't able to sit up until 8 months old, didnt crawl until 14 months old, didn't walk until 22 months old and is experiencing  many other delays for her age.   She has also been sent to a genetic specialist to find out why she is so tiny. At nearly 3 years old only weighing 22 pounds and nearly 5 inches to short for her age.  She has seen countless doctors and therapist, some which are covered through insurance and most which are not. She is currently seeing a Physical Therapist, Occupational Therapist and a Speech Therapist.  My husband has to stay home with her to get her to a from doctors appointments and therapies.  Therefore I am the only one providing income and this has been such a huge financial stress. On top of this we have 2 other small children that need our attention and it gets a little overwhelming trying to juggle life as it hands us lemons.  We have been told that her insurance will not pay for very expensive genetic testing and this is something that must be done to see if she needs additional therapies or if we need to change or keep them the way they are.  Any donation big or small will be GREATLY appreciated and every single penny will go to helping our sweet girl get the right testing and therapies that she needs. It's so heart breaking to see her so frustrated because she cannot communicate.  Thank you from the bottom of our hearts for reading this and contributing to Helping Aviana! Sincerely, Bianca (Mom)