We shall be having a charity stream on the 13th June 2019, where all proceeds will go to the family of an extremely brave boy called Aiden Hunt. Aiden has battled everyday with a condition known as CHARGE syndrome. which causes deafness and blindness amongst other things. His family have worked hard to give Aiden the best care possible. As you can imagine this requires a lot of medical bills and specialist equipment. All at DemonicAmish would like to help with some of these costs and help Aiden and his Family. We would love for as many people as possible to come join us for fun and games and show some DLive love. (suitable for all the family) and LOADS of giveaways. |Keep reading for more information on the charity stream.

NOW is the time for US to take CHARGE!

Here is the story of Aiden Hunt by his father Ethan Hunt.

“My wife’s water broke 8 weeks early but they medically held labor for 2 weeks so he was born 6 weeks early. The doctors thought he had down syndrome with the complications they found during pregnancy but they did a blood test and it came back negative. Born august 21st 2016, Aiden was 4lbs 8oz at birth. He was immediately incubated because they didn’t know what was wrong and while they usually incubate through the nose they where unsuccessful when trying so it had to go through the mouth. The doctors knew of his heart condition during pregnancy he had a ASD and VSD which means there are holes in his heart. But because of the severity of all other surgeries they said it was okay to hold this off for a while.

Aiden’s 1st surgery was to fix esophageal atresia with a TE fistula which means his esophagus wasn’t attached to his stomach it was actually attached to his trachea . The surgery was successful except because of it was connected it was a very tight stretch to attach everything. So because of that they had to medically paralyze him for 2 weeks .

Now that surgery was complete they needed to figure out why they couldn’t pass the incubation tube through his nose and found out that he had choanal atresia which means his nose bone didn’t have passages and was just a solid piece of bone so we scheduled surgery for that to get fixed

Once that surgery was completed he had to get surgery on that same thing because his nasal passage just wouldn’t stay open a total of 8 more times. After a month and a half of being incubated we finally where able to remove the his chest tube and breathing tube and get him on a high flow nasal canula which was a huge step because I finally got to hold him for the first time! We then needed to start working on his eating but with no success they told us he would need a feeding tube but because his stomach was so small because it didn’t grow like other kids stomachs would they had to put the feeding tube through his nose into his jejunum which is his upper intestine. He had a lot of reflux so they had to do another surgery to install a nisin band on his esophagus so he wouldn’t reflux. Genetics took blood when he was born and was able to diagnose him with CHARGE Syndrome.

The letters in CHARGE stand for: Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness.

Once the ENT came in they did his hearing screening and found he has substantial hearing loss but detected fluid behind the ear so they did a surgery to put ear tubes in to drain what fluid was behind his ear. He was finally doing great and off all oxygen after 2 and a half months and they needed him to eat a certain amount before we could go home. We finally where able to go home but with strict guidelines and oxygen and he still had his feeding tube trough his nose. That he pulled out at least twice a week and we had go to radiology to reinsert in because it was placed in his intestine instead of his stomach because his stomach was so small. 2 weeks after being home he had a fever so we took him to the hospital and found out he had pneumonia and RSV so they flight life him to the children’s hospital where he was born and he was put on antibiotics and oxygen and was released 2 weeks later. Then we scheduled surgery for him to get a tube put in so he didn’t have to have the feeding tube in his nose anymore. He got the tube installed successfully but a 3 day stay turned into a month long stay because he got pneumonia and RSV once again. This time it was worse and he had to be incubated but went home one month later. His airway was very swollen so they had to so another surgery to dilate his throat so he had a clear airway.

On April 23rd Aiden got open heart surgery to repair a couple valves and chambers in his heart. While the surgery went great he became sick with pneumonia after so there where a lot of extra complications. He had to stay incubated for multiple days because the secretions where so thick and his lungs looked so horrible. This little man is a fighter and told the doctors pneumonia isn’t stopping me and fought that infection and was incubated 5 days after surgery. He kept showing the doctors he didn’t need there help by doing more than any of the machines where doing for him so he got weened off of all oxygen pretty fast. We went home 7 days after his surgery and he is doing great and gaining weight now!

Aiden doesn’t crawl or walk or talk or eat by mouth yet but he is trying super hard to do all the above! When Aiden was born I had a good job but because of the amount of time I had to take off I was fired . We finally decided to move back to Vegas because employment in Utah was so sparse and I hadn’t been working for about 7 months.

Aiden is such a loving little kid when he looks at you he sees right through you and with his eyes you can tell the amount of love he has is unlike any other!”

For more information regarding CHARGE Syndrome please visit – https://www.chargesyndrome.org


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