Audra rises before the sun and walks down the hall to tend to her youngest son, Reid. Slowly, she lifts his body out of his crib, taking great care to not scratch him or rub him in any way. She walks him to the sink where she removes the 4 layers of high-tech bandaging typically used for burn victims. She prepares a hypodermic needle and then punctures and drains Reid’s blisters. Next she rinses the open wounds with bleach to prevent deadly infection and re-wraps him in 4 layers of fresh bandages. By the time they have finished their daily routine, more than two hours have passed.
The moment Reid was born, the Underwoods could sense that something was very wrong with their son. Audra remembers seeing him being carried across the room and noticing blood on his arm and leg. Distraught, she kept asking Brian why no one was wiping the blood off. When her husband relayed her question to the doctors, they responded that it wasn’t blood. When he asked what it was, they said “I don’t know.” Brian looked over their shoulder at his newborn son, and the color drained from his face.
Reid was missing skin on roughly 40% of his body.
What was supposed to be one of the happiest days of their lives quickly spiraled into the most terrifying. Doctors were walking around with medical textbooks open, trying to diagnose why this baby was born without skin. They rushed him to the NICU, where he was then transferred to another hospital. It was there that Reid was diagnosed with Epidermolysis Bullosa. The chances of getting the kind of EB Reid has – Autosomal Recessive Dystrophic Epidermolysis Bullosa – are literally one in a million.
This strain of EB has a motto, and it’s “The worst disease you’ve never heard of.” The amount of pain Reid endures, every second of every day, cannot be overemphasized. He is on a constant cocktail of morphine and oxycontin. He is always at risk for staph infection, although he has already had several, because his body is covered in open wounds. The disease doesn’t just affect him externally. It wreaks havoc on his internal organs as well. Sometimes Reid will get corneal abrasions from blinking. The blisters cover his lips and mouth so he cannot enjoy eating, and when he swallows he sometimes scratches or rips the skin in his throat. When Audra pops his blisters, Reid looks at her with desperation as he screams out in agony. As a mother, she knows that she has to torture her son to keep him alive. But she also knows that she wants more for him than the life he is living. He deserves more than to just exist. So Brian and Audra made a drastic decision.
They had heard of a doctor who conducts bone marrow stem cell transplants on children like Reid who suffer from EB. His information was not public so the couple had to seek him out. He is the only doctor in the world willing to operate such a dangerous procedure – and the mortality rate was startlingly high. Essentially, what Reid needed was collagen VII. Collagen VII is responsible for holding skin together, and his body didn’t produce it. If he was accepted for the transplant, Reid would endure half of a chemo cycle and one session of radiation, with the hopes of killing off his existing cells in his bone marrow. Then, they would transplant the donor’s healthy bone marrow cells into Reid’s and cross their fingers that the operation works. The only thing they needed now was a match.
Although his mother and father would give anything to be donors, they are carriers for this horrifying disorder, which renders them ineligible. They had two choices: attempt to find a match in the Universal Donor Bank, or have better chances testing Reid’s siblings. Because Barrett and Avery both share Reid’s DNA, the logical step seemed to start there. But they are young, only 3 and 5 years old. They wanted to be tested anyway, and his sister Avery, 5, was a match. The couple struggled to accept that two of their three children were about to undergo a dangerous, invasive transplant. There were countless things that could go wrong. But this was a family of fighters, and they were not going to stop now.
Audra and Reid flew up to Minnesota to prep for the transplant, followed by Brian and Avery. Although being a donor is both risky and painful, Avery didn’t for one second reconsider. After the transplant, Reid and Audra stayed in Minnesota, thousands of miles from home. They have been there for seven months, and are still separated from their family. Although this is an enormous sacrifice, it shadows in comparison to the lengths they would go to to improve Reid’s quality of life.
In preparation for Reid’s return home, the family knew there were large-scale modifications they needed to make to their house in order to foster an environment where he could begin to feel independent and safe. They researched custom carpeting that was so soft Reid could learn to crawl on it without causing painful blisters. They found a device that would raise the acidity in his bath water so they would no longer have to bathe Reid in bleach and vinegar. The Underwoods found an Ameribed that would keep Reid comfortable while he slept, an Air Conditioner/Dehumidifier that would help his skin, a specialized bathtub that would substitute holding him over the sink, and custom clothing designed to allow wounds to breathe and heal faster. They knew these items would instantly improve Reid’s daily life, but they had already put every dime they had into this expensive transplant. This is the part where Chive Charities comes in.
After hearing about what we do for the underdog, Audra and Brian knew if there was any charity that was going to step up for their son, it was us. They were right. With a $30,000 grant from Chive Fund, the Underwood’s list was covered. Although these items will certainly change Reid’s life, it’s not because of the dollar amount. This grant will change his life because when he’s older he will know that somewhere in the world there was a large community of misfits who would stop at nothing to fight for the best possible life for him.
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