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Crystal Lopez

Crystal Lopez knew something was wrong the minute she laid eyes on her daughter Journey. Although she couldn’t pinpoint the exact cause for her alarm, Crystal noticed that her newborn kept her eyes closed more than her first child had and struggled to feed. “Are you sure everything is all right?” Crystal asked the nurse on duty. “Oh, Mom, everything is fine.” And so it went for the first year of Journey’s life, a perpetual power struggle between the mother’s intuition – which screamed that something was amiss – and medical personnel, who turned the family away time after time because they couldn’t identify the source of Journey’s developmental delays, chronic illness and failure to thrive.
 
From the outside, Journey looked normal. But on the inside, her body was under attack. Today, after years of tests and consultations with doctors in several states, Journey has a diagnosis and more than 1,500 pages of medical records to her name. The brown-eyed 5-year-old has mitochondrial disease, a condition resulting from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria create more than 90 percent of the energy needed to sustain life and support growth in the human body.
 
More specifically – at least according to three of her physicians (her team of six is split) – she has Leigh’s disease, a certain type of mitochondrial disease. Journey’s DNA mutation isn’t documented in the United States, making her treatment plan and long-term outlook precarious. “Never did I know any of this world existed at all,” Crystal says. “You don’t even think to test for these things, because she looks fine. But not everyone that looks fine is fine.”
 
Nurturing Journey requires much work, Crystal says. She likens it to caring for a newborn. Each morning the single mom rises early to get Journey and her older sister, 9-year-old Honesty, ready for the day. She removes the G-tube, which feeds Journey throughout the night, before carefully changing the little girl’s diaper and getting her dressed; Journey has very little muscle tone, making each of these seemingly simple tasks a challenge.
 
Crystal then makes the hour commute from the family’s home in Seagoville to one of Journey’s two North Dallas schools. “We just sleep in our house,” she says. “We basically live on the road.” Journey alternates between It’s a Sensory World, a therapy center where she does well, and a private school. Crystal says her daughter was rejected by a number of private schools in the area, including several for children with special needs. She theorizes that the schools – while accustomed to children with more prevalent special needs and developmental delays – were intimidated by Journey’s condition. Finally, The Greek School at The Holy Trinity Greek Orthodox Church accepted Journey under the condition that she be accompanied by an aide each day.
 
While her daughters are in school, Crystal works as a licensed professional counselor intern. She put herself through school, obtaining her master’s degree while simultaneously working to get a diagnosis for her daughter. As an LPC-Intern Crystal is obligated to engage in therapy sessions with other counselors – part of her training. She says no one else can truly understand what she goes through, but the therapy sessions have been crucial to helping her stay sane. Crystal looks forward to completing the program later this year; she hopes to reach out and spread awareness on the disease and to offer other families the information and support she never received.
 
In addition to mom, student and counselor, she has also taken on the role of advocate. Journey’s rare and complicated condition makes this no easy task. In spite of Journey’s long list of symptoms (including apraxia, oral aversion, constipation and muscle weakness, to name a few), Crystal spent years with little to no explanation for her daughter’s condition. Instead, she was commonly told to go home, that Journey had a bug and was just dehydrated. “If I would have stopped listening to my intuition, we would be nowhere with Journey,” she says. “I was told ‘no’ many times. I was denied many times. I was even insulted many times. But I continued. My motivation was saving my daughter’s life.”
 
Frustrated with the dearth of answers, Crystal took matters into her own hands. She became a master researcher, spending hours scouring the Internet, following leads if she came across symptoms that resembled Journey’s and combing through stacks of paperwork with a highlighter in hand. When Journey finally received her diagnosis at 3 years old, Crystal was relieved but says a slew of new questions arose. “There’s no handbook that tells you what do about the little things,” she says. “Like, why is she not potty-trained? Why is she so floppy? Why is she academically behind? The medical diagnosis doesn’t explain all of that. It’s like, ‘Go off into the world and figure out how to manage it.’”
 
As a single parent, Crystal is not only responsible for managing Journey’s extensive day-to-day care but for all of the decisions relating to her health. She admits it is a heavy burden. “All of these decisions are on me,” she says. “I can’t say, ‘Here’s my partner. We decided this together.’ If it goes wrong, it’s all on you. It’s a lot of pressure.”
 
Right now Crystal is deciding whether to sign up Journey for what looks to be a promising new drug. Individuals with Leigh’s disease have a poor prognosis; only a small number have survived to their teenage years. Although Journey’s future is uncertain, Crystal is leery of the possible side effects of the drug.
 
She says she copes by taking things one day at a time and relying on her faith. Crystal wasn’t always a spiritually grounded person, but that has changed since she began walking this path with Journey. The mom muses that when she named her daughter “Journey” just three months into her pregnancy, she had no idea how fitting the name would become. “I’m grateful that I have Journey and I’m able to experience this with her,” she says. “I didn’t know I could be as strong as I am. I found myself through this whole process. You look at life with different goggles, and it just makes it a little bit easier to go on.”

For more information on mitochondrial disease, visit mitoaction.org or umdf.org.