When my kids were infants I obsessed over how much they were eating and how well they were growing. Were they progressing along the growth chart? Were they eating enough? Were they gaining the right amount of weight? Then they reached toddlerhood and for the most part I stopped worrying about their food intake. I relaxed and shifted my many worries. I took this simple thing for granted. But what would happen if one day my healthy children started to lose weight at alarming rates? What would happen if my strong independent children were labeled failure to thrive and no one could figure out why? What if years passed and the situation continued to deteriorate and their organs, including their brain, were impacted?
Well, this is exactly the situation a single mother of three and Veteran from Loudoun County, Virginia is facing with her son. Except the child is not an infant, or a toddler, or even a tween. He is a 5 foot 8 inch tall 16-year-old boy named Reece who weighs 88 pounds and is in failure to thrive as a result of chronic clinical malnutrition after a freak accident to his abdomen inhibited his ability to digest food, impacted his ability to eat, and left him with constant GI pain.
Reece’s amazingly strong and courageous mother, Crystal Deck, a former Marine Corps. Intelligence Analyst, has been fighting for her son since he fell off an obstacle course in 2011 and began down a journey of even more unimaginable obstacles. Obstacles that have included 15 operations/scopes/biopsies and visits to doctors around the country — most of which couldn’t offer a real solution. He has visited hospitals in San Diego, Birmingham, AL, Little Rock, AR, and several specialists in Maryland. He is currently under the care of doctors at Johns Hopkins and the Kennedy Kreiger Institute. Yet, doctors still can’t determine exactly why Reece is unable to gain weight. Or why he is unable to have a bowel movement. Or why he regurgitates his food. As a result he has organ damage and encephalopathy affecting his brain.
Reece, a former honor student who loves animals, sports, cooking and spending time with his siblings, has had to leave school and sometimes struggles to help his 6-year-old brother with his homework. Crystal said, “He once played three sports and now breaks his bones walking to the bathroom.”
Reese is also autistic and suffers from social anxiety. According to Crystal, “He is verbal but really doesn’t like to talk to people much. When we go to the doctor he, even at his age now, prefers to sit in my lap and whisper his answers to me and have me tell them.”
Crystal and I went to high school together, but we haven’t seen each other in 20 years. It is only through Facebook that we have kept in touch and I have followed her story. My heart has broken so many times for her and her family. Most recently, she shared a photo of her son on the scale with the note that Reece had lost all the weight he had slowly gained since December following a surgery to place a G-tube in his abdomen.
According to Crystal, “There are a lot of children on feeding tubes for many different reason. A NG tube is designed to be placed for about 3-5 months and if you are needing tube feeding for longer, you are moved to a G-tube in your abdomen. These are designed to be in place for about a year. We are hopeful and prayerful that he will be with a tube for a limited amount of time, but the doctors have prepared us for the fact that he will most likely need it for life. He has been battling an H pylori infection for years and although we treat it, it never goes away, which is highly unusual. At this time, they have decided to focus on his weight concerns and not on the H pylori.”
This surgery was supposed to be an answer to their prayers — instead they find themselves at a loss. “We thought the last feeding tube was going to be a miracle cure. I hate to admit it, but we put all our eggs in that basket. So, it has been a huge disappointment,” Crystal said.
That photo really struck a nerve. My 16-year-old son is only about one or two inches taller than Reece. He weighs nearly 100 lbs more than Reece. My 9-year-old son weighs almost as much as Reece. I wanted to help, so I offered up my small platform to share their story. To maybe somehow find help for this family — a family that has sacrificed so much.
“Life is difficult every day. I have been trying to get out from under medical bills for years and we are pretty close, but there are still daily expenses. Any work I miss to be with him hits us hard. I don’t have huge dreams of being rich and I firmly believe that you only appreciate things that you work for, but I would love to be able to pay everything each month and maybe, just maybe end the month with more than a few dollars in the bank. I have growing children who are constantly in need of things. Just this week alone, rent, car payment, car insurance and Reese’s tuition [for the online home-school program she has to pay out of pocket] is all due. I can pay the rent and nothing else, or a few other bills and not the rent. This is not exactly where I want our lives to be. My house is filled with medical supplies. Stacks of formula in each room and an entire shelf in the living room full of tools and equipment. We have a feeding pump and two IV poles. We live in a tiny 2 bedroom apartment so at times there is little walking room. But it’s our space and the kids are happy here and that is all that matters. I am blessed to work about ¼ of a block away from our apartment, on the same street. I work from 1-8 PM Monday through Friday. I leave at 12:55 and Lexi [Crystal’s 14-year-old daughter] is home at 3:30 pm. Sometimes Reese is home alone during that time, which is fine, but if he’s not feeling well, I have friends who come sit with him. When Lexi gets home, she helps him flush his tube and refill his bag with formula. I have wonderful children and I am thankful every day for them.”
It is not easy asking for help or admitting that you NEED help, but, Crystal, Reece, Lexi and even Sean — Reece’s treasured 6-year-old baby brother — do need some help. They need support. And they need prayers. This a family that is blessed with so much love. You can feel it as Crystal talks about her son.
“Reese is a special kid. I enjoy him. He’s not just my son, he’s someone I like to spend time with. He loves children, he loves animals. Prior to all of this, he was a three sport athlete and honor student. He had dreams of attending University of Alabama and wanted to spend his life saving sea turtles. He found a sea turtle hospital and summer program in South Carolina and that was his dream. Reese is a wonderful big brother. He adores his siblings and Sean especially is very attached to him. He loves all animals and sports and enjoys cooking. He likes to read about the Holocaust and Nazi era Germany, thanks to his 7th grade history teacher. He plays Minecraft online. He is not active in social media like most people his age. He has a Facebook and Instagram but rarely ever gets on them. He is an old soul, who appreciates a written card or note more than an email. Reese has the best attitude throughout all of this. He ALWAYS tells me not to worry and that God will take care of everything. He has a great deal of guilt and feels like if he weren’t sick, our lives would be better because I wouldn’t stress about bills and Lexi would be able to do more of the things she wants since I often have to tell her no, we can’t afford that. He is my strength every day. He gets sad and scared and frustrated but he can always find the humor in things and will randomly tell me thank you during the day when I am plugging in his pump to charge or cleaning his stoma. He is my hero.”
Reece and Crystal and Lexi and Sean are my heroes. They are a deserving family. I messaged Crystal some last-minute questions when she wrote, “Reece is next to me saying ‘tell her we make good lasagna!’ I love his spirit. It’s impossible to stay down around him.”
How can you not love this?! Please help them if you are able by visiting their GoFundMe page. If not, please share their story and keep them in your prayers and thoughts. Or leave some encouraging words in the comments below.