A Little Warrior Named Reid Battling the Worst Disease You've Never Heard of

This week as I packed the umpteenth turkey sandwich with only a tinge of butter and please cut off the crusts for child one, a cinnamon-raisin bagel with only a medium amount of butter for another child, a tupperware container with a bit of turkey but none-of-the-brown-stuff-on-it for the youngest child, and fruit with snack packets for the eldest (in specified containers only, hold the veggies), I wondered if maybe I was missing something in the world of motherhood. Is it supposed to feel this mundane? To put it bluntly, how is it that the majority of our mothering days are comprised of small, thankless moments which are rarely noticed or appreciated?

As I left the house that day, I guess I was hoping for some mothering affirmation.

And that was the day I met a little boy named Reid and his angel momma, Audra. And suddenly my menial cutting-the-crusts-off-challenges became absolutely trite. As God often does, the day I met Reid and his sweet momma, my perspective shifted. Here is their story.

Aside from the wounds all over his little body (which were noticeable and significant), Reid looked like any toddler. In fact, he looked and acted a lot like my little girl, except for the fact that he couldn't walk. That, coupled with the fact that as he sat clinging to his mom's chest, asking her to, "Scratch here, mommy." "Itch more," often wincing in discomfort, and sometimes pain - the entire hour.

Reid was born the same year as my daughter, so I couldn't help but love him right away. He held on to his momma's neck like a teddy bear; it was clear they had an unbreakable connection. She seemed to be his lifeline. I was captivated by that. Audra spoke to our preschool group . She was kind, warm, and ... well ... wise - wise in a way one gets after she's seen the eye of hurricane, been sucked up, hurled around, and spit back out. But not a bitter. Not angry. Just wiser. Gentler. Softer. I was humbled. And so drawn in.

She shared with us the story of Reid, her third child. Reid was born on May 20, 2014. The pregnancy was normal with no complications. Like her two pregnancies prior, she had undergone prenatal testing, and everything was 'fine.' All tests indicated she and her husband were having a healthy baby boy, just as with her other pregnancies. Reid has an older sister, Avery, and an older brother, Barrett. Audra and Brian couldn't wait for their third child to arrive.

When Reid was born, the doctors knew immediately something was wrong. Reid was missing most of the skin on both of his feet, the skin on one shin up to his knee, the skin on the backs of his hands and a large spot on his back. His doctors had never seen a condition like this and it took a bit of time to identify what it might be and how and where to treat Reid. He was transferred to Children’s Hospital of Atlanta and admitted to the NICU for two weeks.

After much testing, it was found that little Reid had a rare genetic disorder called Epidermolysis Bullosa (EB). Epidermolysis Bullosa is a connective tissue disorder that causes painful blistering of the skin and the mucous membranes and can often be fatal within the first year of life. Even more tragic, it was found that Reid has the most severe form of EB, Recessive Dystrophic EB (RDEB), which affects less than 1 in 1 million newborns. Recessive Dystrophic EB (RDEB) is characterized by the absence of Collagen VII, which is one of the proteins that keep the layers of skin together. Severe cases of this condition involve widespread blistering externally and internally, disfigurement (fusion of the fingers and toes from scarring and joint deformity) from repeated scarring and other serious medical problems (severe infections, skin cancer). The constant, daily pain and irritation of EB is often compared to the pain of a third-degree burn. Not all of Reid's sores appear on his skin; the lining of his esophagus, stomach, throat and bladder can also form blisters, leading to further health risks.

From birth, Reid has learned to endure daily, what most of us can’t imagine. As an infant, Reid underwent an experimental bone marrow transplant in an effort to gain healthy stem cells to help improve the quality of his life in some way. Avery, his older sister, was a donor match, and served as the donor. The procedure was done at the University of Minnesota, where Reid is treated by Dr. Tolar. Audra spent seven months at the Ronald McDonald house while Reid received chemotherapy and radiation treatments and recovered. Most of those months were spent completely quarantined alone with Reid, due to the fragility of his immune system. The procedure was designed to help Reid begin to create Collagen VII. How did Audra make it through those seven long months away from Brian, her husband, and Avery and Barrett, her other two children back in Marietta? "My faith is the only thing that kept me going."

Still today, and every day of Reid's life going forward, dressing Reid's wounds takes hours each day. His arms, legs, and all wounds must be bandaged and wrapped. This procedure usually involves a bleach or vinegar bath to disinfect the wounds. Blisters must also be drained to reduce pressure and pain, and often blisters, if not punctured and treated, can fester to the size of a ball. Topical ointments are applied to reduce infection and prepare the skin for special bandages. Bandages have to be non-adhesive; no tape can be used but instead wounds are wrapped in gauze. Pressure points and friction must be avoided. It is a challenge each and every day to get all of this right and keep the wounds from becoming infected. Drinking from a sippy cup or banging his hand on a ottoman - normal occurrences in the life of any toddler - can cause severe wounds to his delicate skin. Life with EB is dangerous and ... fragile.

EB not only affects the skin, but it also attacks internal organs. Seemingly simple activities like eating can cause serious complications in the esophagus and other organs. Reid can eat only through a Gastrostomy Tube or G-Tube. This is also how many of his medicines are given.

In the midst of the daily challenges, Audra and Brian must live knowing there presently is no cure for EB. Yet their hope remains on higher ground.

Reid continues to be treated by Dr. Tolar who runs the stem cell institute at the University of Minnesota. Dr. Tolar and his team have developed a variety of stem cell treatments to both improve the quality of life for EB patients while working diligently to find a cure.

Audra reminded our preschool group, before Reid's birth, she wanted to be just like every other mom on the street (who doesn't?). But having a child with such a devastating diagnosis caused her to re-evaluate everything. Now, the daily tasks with Reid, although difficult, demanding, and daunting, she counts as a privilege. Each day she has with him she considers a gift.

As Audra emotionally concluded her time with us, Reid shifted, visibly uncomfortable: "It itches, mommy." And then it occurred to me: while she had been speaking so candidly to our group, she had simultaneously been soothing and comforting her son by constantly scratching, itching, and gently touching the burning, painful skin spanning his entire body. She had been doing this for the entire hour while speaking to us; it was nature to her. And she will continue to scratch, itch, and soothe Reid's skin all day, every single day for the remainder of his life. Reid will not know one pain-free day on this earth when his skin does not itch, burn, or sting. Yet, the scratching, the itching, the soothing, the sitting and simply being held by his momma are the small acts which provide Reid the greatest comfort, love and relief.

Maybe just a little bit like cutting the crusts off turkey sandwiches.

Thank you, Audra and Reid, for reminding this mom behind the keyboard what really matters in life. May we, as moms and dads, learn to see the meanial as what matters.

To learn more about Reid's story, visit http://crawlingforreid.com/. To donate to a fundraiser for Reid happening next Saturday, March 17, visit We're all crawling for you, Reid!