Reed Holton Henderson was born December 13, 2011. Less than three years later, he passed away on August 12, 2014. He was 2 years, 9 months, 30 days old.
At tender age of two, Reed experienced cardiac arrest.
Reed’s medical condition was complicated, and his diagnosis unfolded over two years. During this time he went to dozens of different medical specialist and endured a battery of tests – 4 EEGs, 3 MRIs, 2 spinal taps, and what seemed like a million different blood tests.
Ultimately, we discovered that Reed had a rare genetic mutation of his ARX gene (formally Aristaless Related Homeobox). Only a few dozen kids have ever been diagnosed with this condition, and there is no known treatment. Reed’s symptoms included seizures, developmental delay, fisted hands, and low tone in his trunk and high tone in his arms and legs.
In spite of the complexities his condition imposed, Reed was not only alert and responsive but he had some amazing experiences. Reed went snow skiing and water tubing. He enjoyed music, swinging, and when his big brother read books to him. Reed’s bright smile and infectious laugh touched the lives of everyone around him.
All of this was not just emotionally and physically difficult for our family, it was also expensive. That’s why we’ve created the fund – to help other kids like Reed and their families.
At tender age of two, Reed experienced cardiac arrest.
Reed’s medical condition was complicated, and his diagnosis unfolded over two years. During this time he went to dozens of different medical specialist and endured a battery of tests – 4 EEGs, 3 MRIs, 2 spinal taps, and what seemed like a million different blood tests.
Ultimately, we discovered that Reed had a rare genetic mutation of his ARX gene (formally Aristaless Related Homeobox). Only a few dozen kids have ever been diagnosed with this condition, and there is no known treatment. Reed’s symptoms included seizures, developmental delay, fisted hands, and low tone in his trunk and high tone in his arms and legs.
In spite of the complexities his condition imposed, Reed was not only alert and responsive but he had some amazing experiences. Reed went snow skiing and water tubing. He enjoyed music, swinging, and when his big brother read books to him. Reed’s bright smile and infectious laugh touched the lives of everyone around him.
All of this was not just emotionally and physically difficult for our family, it was also expensive. That’s why we’ve created the fund – to help other kids like Reed and their families.