by Mitchell Kirk
When Julie Martinez gave birth to her daughter Alexandra Darland 15 years ago today, the doctor told her no one at the hospital had one ounce of hope for her child.
“She will have a seizure and she will die,” Martinez recalled the doctor saying. “And she’s going to be 15 on Wednesday.”
Born premature at 26 weeks and weighing 3 pounds, Alexandra was diagnosed with cerebral palsy, scoliosis and hydrocephalus, a condition in which an abnormal amount of fluid accumulates in brain cavities. She is also mostly blind and suffers from seizures and contractures, the permanent shortening of muscles and joints.
Alexandra requires total care. Her parents lift her in and out of her wheelchair, bathe her and feed her using a gastric feeding tube.
At about 4 feet tall, Alexandra has grown out of the special car seat she uses when she travels. A wheelchair van would allow her to travel safely, but their $30,000 to $40,000 price tags are yet another element in the long list of things Alexandra has had to overcome.
Martinez said most children with her daughter’s ailments eventually leave home to live at professional care centers.
“We want to keep her at home as long as we can but I can’t travel with her unsafe either,” she said. “If I can’t get all the things that I need to take care of her at home, I won’t be able to keep her at home. That’s my fear.”
In an effort to get a wheelchair-accessible vehicle for Alexandra so she can remain at home, Martinez entered her into a nationwide contest hosted by the National Mobility Equipment Dealers Association coinciding with National Mobility Awareness Month, observed in March. People can participate in the contest by voting online once a day for the entrant they think is most deserving to win a custom wheelchair-accessible vehicle.
The winner will be the entrant with the most votes by May 10. People can vote for Alexandra by visiting mobilityawarenessmonth.com, clicking “Enter or Vote Now” and searching for Alexandra Darland in Logansport.
Martinez said Alexandra’s biological father, a Logansport resident, doesn’t visit her. Her stepfather, Abraham Martinez, has been helping take care of her since she was 2 years old. For ten years, he stayed at home with Alexandra while she worked.
“He has been her father since she was 2,” Julie Martinez said. “She loves him. He just has to clear his throat and she gets really happy. He knows exactly what she needs. If she’s fussy and I can’t figure it out, he’ll just go in there and move her or do something and it works every time.”
Translated by Julie Martinez while he spoke in Spanish, Abraham Martinez said he’s never seen Alexandra as a burden and that he loves her very much.
“It’s a father-daughter relationship,” Abraham Martinez said. “It’s hard to see her suffer.”
Julie Martinez said Alexandra loves attending Logansport High School, where she is a freshman. She also enjoys visiting parks and listening to music — she admires Bachata, Salsa, One Direction and Taylor Swift.
“Because she can’t see very well, her hearing is like superhero hearing,” Julie Martinez said.
Julie Martinez said she nicknamed Alexandra “sassafras” the day she was born for her sassy, spunky and fun-loving personality.
“She’s so happy,” she said, adding Alexandra finds it hilarious when people sneeze. “If she’s awake nine hours, she’s laughing eight and a half of those hours.”
Mitchell Kirk is a staff reporter at the Pharos-Tribune. He can be reached at 574-732-5130 or firstname.lastname@example.org.