#MollysKids: Rachel Reed (and a book drive!)

CHARLOTTE, N.C. (WBTV) - Rachel Reed began life as “a perfect little girl,” says her mom, Jen. She only small, typical hiccups of health concerns. That’s why in October 2020, as COVID still blanketed our world, Jen was thrown when her teenaged daughter’s headache turned to an intense migraine and wouldn’t go away.

“I thought initially she just needed sun,” Jen said. “Or, maybe COVID isolation was getting to her, or the stress of virtual school. Nope. I was wrong. October 2020 turned out to be the beginning of a very long and continuous medical journey for Rachel.”

This 17-year-old from Dallas, in Gaston County, was initially admitted to her local hospital for a short stay. The initial diagnosis of Dysautonomia (she does not have POTS) was given. Fast forward a month and despite treatments, the migraine was worse. Rachel was admitted again to the hospital, this time for eleven days, away from Ashbrook High School.

“It is that trip where we met an AMAZING neurologist,” Jen said. “We found out Rachel had Chirari Malformation, and Ehler Danlos Syndrome (EDS). I couldn’t wrap my head around it at first. I knew Rachel’s legs ‘bent weird’ or her joints often ‘popped out.’ In fact, we called her ‘grace’ because she’d fall and trip… but how could being flexible cause THIS? That’s what I couldn’t understand. How it was so severe, and how it had been missed for so long.”

The next year was spent tackling the migraine, without much success. Rachel passed out frequently with significant side effects to the medications. Being a young woman with big personality, she nicknamed her migraine types to normalize them. (Sam-the OG, Double Pressure Dan, Tension Timmy, Stabbing Steve, Hammering Henry.) Through it all, she kept up with virtual school.

“She didn’t let anything stop her,” Jen said. “Her teachers helped her to adapt and succeed in challenging circumstances.”

By fall of 2021, Rachel started to experience worsening stomach issues. She’d get full too fast, not be able to use the bathroom, then not be able to eat or drink without significant pain. In six weeks she lost 40 lbs. and was told by her gastro doctor, “As long as you are peeing twice a day, you are OK.” Her mom didn’t like that advice.

“I was not OK with this,” Jen said. “We were watching our daughter fall apart right before our eyes. Our Neurologist told us we needed to go to Levine Children’s. We tried to get in with the GI specialists there, but they were booked several months out. So, we went to Levine’s ER Department in January 2022 where our now GI specialist was actually on service that week. Little did we know, that move would be a miracle for our girl.”

Rachel ended up staying hospitalized many days. She left the hospital with a nose tube, and prayers it would be short-lived. It wasn’t. A month later Rachel was re-admitted for surgery… which also came with complications because, as Rachel jokingly says, “she doesn’t have the fun party package of EDS.”

Instead, her skin and intestinal tissue just can’t hold a tube in place.

“Nothing has come easy,” Jen said. “It has been a work in progress.”

By mid-January of this year, added side effects and concerns became too much to handle from home and Rachel was admitted to Levine’s on January 15th, 2023. She was there 103 days. In that time, Rachel had multiple surgeries for gastro-related issues. Doctors continued to be challenged and work through “outside the box options” as her system didn’t respond the same as others.

“Never did we realize how complex it could be for our once-healthy daughter to struggle to have basic nutrition through a tube,” Jen said. “It’s something you can’t prepare for as a parent. However, she continues to overcome multiple physical barriers. Her goal was to get out of the hospital to enjoy her last weeks of her senior year of high school.”

Because Rachel was at the hospital for so long, she learned about LCH’s resource floor, which includes a library. She—being a go-getter teen who still has an active mind despite a body causing setbacks—is now trying to build the library with books. She talked to the Librarian about what books were needed and along with the help of a beloved nurse, created a donation program called, “Reed Your Worries Away.”

Rachel Reed. “Reed Your Worries Away.” Get it? This mission connects Rachel’s passion for reading with the real life need for distraction in a chronically ill world. Books, she says, brought her joy, connection, and distraction. She wants others to have that same opportunity in their hospital journey. So now, Rachel has an Amazon wish list of books she researched and discussed with the librarian.

Her goal is to get 2,000 books donated. All are sent to Rachel’s home. So far she has had about 100 purchased and donated. If interested, here is her Amazon wish list link.

“As a parent, I have seen my daughter struggle to do many things but she ALWAYS brings joy,” Jen said. “She is the most selfless person I know. Her medical chart has a list of terms including Ehler Danlos Syndrome, Dysautonomia, Chronic Migraines, Chiari Malformation, Mast Cell Activation Syndrome (MCAS), failure to thrive, Delayed Gastric Emptying, Gastroparesis, and others. What it doesn’t list is her persistence through it all. She has fought to get through high school years, even taking college classes. She’s one semester from an associates degree. She missed out on “normal” social interactions associated with high school, but rather than be bitter, has a level of compassion uncommon in her age.”

Rachel’s service dog, Landon, is the light of her life. Jen says his training has given her daughter a freedom.

Jen also says Rachel loves small artists, listening to music, reading (obviously), has quick wit, believes in building one another up, validates others, and compliments complete strangers. She embraces her body’s challenges, never hating the scars.

“She owns the story they tell,” her mom said. “She can be a quiet observer, but her smile lights up a room. It doesn’t surprise us she started, ‘Reed Your Worries Away.’ That’s total ‘Rachel-style’.”

Thanks for your kindness, Rachel. A big welcome to #MollysKids.

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