Two years ago, my youngest daughter, Annalise was born in Cape Canveral, Florida only to be born with numerous issues. At the time of her birth, she was unable to breathe on her own without having a medical ventilator. During feedings, myself, wife and the medical staff noticed that the milk was seaping out from her nostrils and at that moment we were all made aware that there was a medical complication.



She was air-lifted to Florida South in Orlando where she stayed for the first two months of her life. Swallow studies were conducted and it was found that she was unable to swallow any liquids where she then underwent a Gastrostomy Tube Placement to ensure that she would be able to have the nutrtional value she would require. She received numerous MRI's and CT's to discover the reason as to why she was having issues such as Choanal atresia, Profound hearing loss, Colobama of the eye and developmental issues. It wasn't until a year later that we received the Genetic results to verify that she had a CHD7 gene mutation which is more commonly known as Charge Syndrome.



She sees Seventeen medical physicans on a regular basis and three therapists (physical, speech and developmental). She will be receiving Cochlear implants to be able to potentially have some sort of hearing throughout her life, a particularly made wheel chair & walker in order to be mobile since she is unable to still walk at the age of 2.



She is on a feeding tube system 18 hours of the day to ensure she receives the proper value of nutrition, and still has yet to pass any swallow study test done. She has slowly started to pick up a few portions of sign language to communicate with my wife and I and her older sister. Her only method of motion is to crawl which she started doing at 19 months old. When she is out in public, she is in a specially designed wheel chair which we must push for her. Since she was born, she has had to be hospitalized 8 times for failure to thrive by losing body weight as much as 5-10 pounds from her standard 24 pounds that she weights and respiratory failure.



Recently moved from Cape Canaveral, Florida to Seattle, Washington in hopes to receive better medical care for our daughter in order for her to have a better lifestyle and have better opportunities to excel and grow throughout her life.



Most say having and raising children is the hardest thing they could ever do in life. I say different. Having and raising a child with special needs is. Infants/Toddlers who were born with Charge Syndrome have a higher fatality rate until the age of 3. Every day waking up I wonder if she is going to make it through to the next day and grateful for every new day that comes that she is alive.