Jason's Story written by his Mom, Jamie
Our story begins when I was just 20 years old and found out were expecting our first child. Scared was an understatement. Things seemed to be going okay until just prior to 6 months pregnant the doctors thought some things weren't right. My little boy had a possible heart issue and fisted hands in the ultrasounds. Tests were inconclusive for anything positive. Delivery was just as scary when we went in to be induced. His heart rate kept dropping so I was sent for an emergency c section. They didn't know if he'd be breathing so the room was filled with doctors, nurses and many other staff members preparing for the worst. HE WAS BREATHING!! He was a tiny 4 lbs 1 oz and 17 3/4 in long. I kissed him as they took him off to the NICU. Just 5 days later he was released on a snowy winter day. When Jason was just 1 month old he stopped breathing in the middle of the night while up for a feeding. I screamed for his dad to call 911 as they instructed me to perform CPR on my tiny 5-6 pound baby boy. EMT's arrived. He was intubated on scene and transferred to our local hospital. After figuring out it was heart related he was transferred to a children's hospital and then to a big hospital in New York. It was at that time I was informed of his 1p36 deletion syndrome diagnosis. If we weren't dealing with enough! I was told he was tested in the NICU but no one let us know it was a positive diagnosis. If we had known, things would have been looked into more closely. He had 2 heart surgeries at his month stay in the hospital. Geneticists told us at 10 months old that he would never eat, sit, crawl, walk or talk. He dealt with many illnesses in his shirt lifetime. Many years of seizures, medications, hospitals and therapies. Today, Jason is a healthy 9 year old boy. He's been seizure free for 5 years. He eats, walks, (almost) runs. He's completely non verbal but believe me, he has a lot to say. He is one of the most amazing people I've ever met. I truly couldn't imagine my life without him. Times are tough, and I know the future will get even harder but I will continue to push forward and fight for what he deserves!!!
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to 1p36dsa.org. Shop For an Amazing Cause.
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