Please help me with medical expenses. Hello, my name is baby Aithen, I am 8 months old. I was born with a rare disorder called lissencephellay, lifespan for this disorder is 3 months to 10 years old. This is very rare and only happens 1 in 11 million babies. My brain did not fully develop or did not get the folds. Due to this unfortunately I have several health problems, which include;  optic nerve hypoplasia which is legally blind, severe hearing loss, I have a cyst in my brain, feeding difficulties, floppy airway, I have a gtube, I have respiratory distress, strider when breathing, I get daily seizures; as well as daily attacks of involuntary uncontrolled muscle jerky movements that can last from 45 minutes to 3 hours nonstop; during that time my heart rate goes up . I am small for my age, when people see me they think I'm only 3 months old. My parents are desperately searching for treatments and cures. I spend 4 months in the NICU, I've been transferred to 7 different hospitals, I have seen many specialist. I have tried every seizure medicine there is, and everything they can offer me. In order for me to come out  of the  nicu and be home with mommy and daddy, doctors had to place me on hospice. Some Doctors said I would only live 3-5 months. But I have met the odds, I am strong, a survivor, I have been through surgeries and many treatments, daily injections and many medicines. I have tried all western drugs and therapies but nothing has worked for me. I am determined to live and fight this battle, I am no longer on hospice. My parents have a lot of faith and are seeking various treatments. Unfortunately medical expenses and bills are not cheap. A few treatments have helped people with my disorder, as well as kids with optic nerve hypoplasia regain their vision. I want to live and I want to live a better life. I have gained weight, length and I am getting stronger each day. Doctors had said I needed a tracheotomy and that I would never be able to breathe on my own. During my nicu stay, a doctor even offered my mommy and daddy to stop all my feedings and just let me die. Now I am breathing on my own, room air, with no oxygen, my organs are all functioning good, I am gaining weight and growing, I am
cooing and smiling and I love to eat. My daddy and mommy never gave up on me and have been fighting the battle with me since day one. They are still fighting with me daily. I am very strong, I do not cry or whine only when something really really hurts. I am a very good baby, since I've been out of the hospital, I have developed milestones doctors said I would never reach, mommy and daddy pray with me daily and give me comfort. My only dream is my vision to be able to see my parents and regain my strength and improve my brain folds to stop the seizures. Any donation big or small, helps me get closer to being able to get this treatment; the sooner the treatment the better the results.
Thank you for reading, God bless you. Love Baby Aithen