Austin Milo Gamby was born with a very rare genetic disorder. There is no name for this "syndrome" yet. All we know is that it is called deletion 1 xy q42.3. He was born 8 weeks premature and spent 6 weeks in the NICU. He was born with ASD and VSD (holes in the top and bottom chambers of his heart), agenesis of the corpus callosum (the middle part of his brain is underdeveloped), hypotonia (low muscle tone), hernia, and hypospadias. He also has reflux, seizures, vision problems, and is severely behind in all forms of development. At almost 4 years old, Austin still cannot sit up unsupported. He is making progress though! He can feed himself a bottle, roll over, and say "mama"! Austin has had open heart surgery, hernia repair surgery, and hypospadias repair surgery. There is no "cure" for his condition, but we can help him have a better life through therapy, working with him, and of course just loving him. Despite all of these set backs, he is still a very sweet and happy little boy. Unfortunately, we are at a point in life where bills have caught up to us, and we are having a bit of a rough time. We have insurance, but no not qualify for disability or medicaid anymore. We are in the process of finding other forms of support that are not income based. Although, according to Social Security we make "too much" money to qualify, we do not make nearly enough money to pay for all his needs. And many things are not covered by insurance. After talking to some friends and family, I thought I would give it a shot. Especially since we are at a point in life where we are struggling with our regular bills. My husband does work, but he is in the construction industry and with the state of the economy, he could be laid off at any time. I work a part time job, am in the process of applying for another one, and also am trying to start some home based businesses to help with extra income. Despite this, we are still coming up short lately. Right now, I am trying to raise money to get some extra special equipment to help make his life easier. This equipment is not covered by insurance. I would like to get Austin a special seat that we can take out with us to resturants, grocery shopping, etc. I also have a 14 month old daughter, and it is nearly impossible for me to take both children grocery shopping. I feel like this chair will help us be able to include Austin in more activities. I would love to be able to take both of my children to the park to swing! Please visit the website below for information on their products
Firefly Friends Goto Seat
They have amazing innovative products that I think would be very helpful to Austin and our family. I am not quite sure the full cost of these products as they are from out of the country and would require international shipping, etc, but I am working on getting all of the details. Anything that you could donate would be a huge help to us. I will post updates and pictures on my facebook page for anyone interested.
Add me as a friend on my personal page! (It is set to private, you must send me a friend request to view)
Visit my Photography facebook page here!
Any additional donations made will go towards special equipment that we cannot get covered and current and future medical and therapy bills that we have.
This is a little out of my comfort zone to do this, I am usually not one to ask for help, but I feel like better now than never, and Austin deserves any help he can get! We appreciate anyone who takes the time to read this. Thank you.
John, Michelle, Austin, & Avary
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