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#teamGavin

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Gavin Dreas Cardona-Arroyo was born February 24, 2014. From birth he has had many issues. He was born 6 weeks early however due to a condition called intrauterine growth restriction he was the size of a baby born at 28 weeks - 2.04 lbs and 15 inches. Doctors haven't been able to figure anything out as to why so small. Why he was bon so early. Why my water broke. Why he almost died. And at this point, they still haven't.

At birth it was thought he had trisomy 13, a deadly genetic disorder. The doctor's were wrong. This was the start of our medical journey.

With every issue the answer is the same - "we can't tell you why". There has been no definitive answer to much of anything ever with Gav. He has been followed by genetics ever since. Since birth: he is blind in one eye and now wewrs glasses to try and keep his other eye strong. He was diagnosed with infantile spasms in October 2014- which is basically a seizure disorder. He had spinal surgery in January 2015 for a tethered cord. The surgery has helped him grow tremendously. However he's a 16 month old baby the size of a 7 month old. And this next test helps us figure out what's really going on.

Every genetic test we can run has been run. Now an exome sequencing test must be run. This breaks down the DNA to proteins and those proteins hold the answers. It will explain why my happy healthy pregnancy turned into a nightmare which almost killed my son. Why certain parts of my son's body are still pretty undeveloped. It will give me answers to questions I didn't think to ask yet.

This test however is not covered by insurance and can be at upwards of $10,000. This test will be able to tell us what he has and how to help him.

I'm a single mom. And seriously hate the idea of doing this. Because the world we live in is a scary place and people are sick all of the time. I have happily taken care of him by myself with the love and support of the most amazing family a girl could ask for. I have been blessed to be the mom of a miracle who up until now has been good. Even with all the struggles. My baby boy has a smile that warms hearts. You just wanna look at him all day. Gav is a tough kid. But as him mom, I HAVE to be able to help him. Please help me help my baby. No donation is too small. Even if you read this and don't can't donate... then share his story. EVERYTHING is appreciated. Me and my little family from the bottom of our hearts thank you.



Exome sequencing

Organisator

Jeni Arroyo
Organisator
Buffalo, NY

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