Mustang Public Schools received a donation of specialized equipment this semester valued at more than $200,000. For Kristy and Darren Deadmond, it’s a gift in memory of their daughter and specialized possibilities for children they may never meet.
Their daughter, Shelbi Deanna Haskin, a 2014 Mustang graduate, passed away unexpectedly in August at the age of 24. She was born in 1994 at 29 weeks gestation. She weighed a little more than three pounds and had to be revived at birth.
“She spent a month fighting for her life,” Kristy said. “She fought for every breath. Every day she lived was an absolute miracle.”
Shelbi’s brain had not developed properly. Doctors said parts of it were missing entirely. They told Kristy to put her daughter in an institution. She would be a vegetable, incapable of speech or the ability to understand her surroundings. The medical community made regular predictions on the length of her life, and Shelbi proved them wrong time and again.
The Deadmonds knew their daughter would have a more difficult life than other children, but they made a decision to ensure it was no less rich.
“We, as a family, could see that twinkle in her eyes,” Kristy said. “She was in there. She was just trapped in a body that didn’t listen to her. So we fought to get her whatever she needed to be able to break through. And she sure did. Since she couldn’t speak and couldn’t use her hands for sign language, she developed her own signs at only 3-years-old. She started speaking when she was 5. She beat every obstacle.”
Shelbi had help in her victories. The family adapted their home with switches, ramps, tape and stickers. If she wanted to accomplish something, the family was creative in their efforts to make it happen.
“We took her everywhere: four wheeling, jet skiing, Disneyland, swimming, camping,” they all said. “At Frontier City the Silver Bullet (a roller coaster) was her favorite. We even strapped her to us so she could ‘walk’ on the sand and feel the waves of the ocean. Shelbi was fearless. She was extraordinary. She was smart. She was the purest of souls and she made an impact on everyone she met.”
Meg Corn, assistant director of special education agreed. She was Shelbi’s teacher when she was in high school and included her in cheer and pom.
“She came to all home games and was down cheering with the girls. Anyone who knew Shelbi was blessed,” Corn said. “She was an angel sent to us. Her smile would light up a room. Her laughter was infectious. She was loved by everyone. I am a better person having Shelbi in my life.”
When Shelbi passed, she left behind a family in mourning and an array of specialized, expensive equipment. Her mother had learned through sheer determination how to navigate the system and find the best technology available.
“The system is a beast in itself. Did you know that it can take a first time parent over a year to get a simple, bottom of the line push wheelchair? And that's not including the things that a specific child needs like power recline, tilt, custom seating, power, adjustable footplates, a head array system. That wheelchair is over $45 thousand,” she said. “I met with state officials, CEOs, DHS, manufacturers, specialists, special needs coordinators, insurance officials and military liaisons just to try different equipment.”
Kristy said for many parents the system itself is so overwhelming they give up and settle for the most basic options.
“At first, it’s too overwhelming,” she said. “I think part of that is because you have to admit and confront that there is something wrong with your baby that you can’t fix and that you can’t control. That’s a hard enough step without all of the other red tape to actually get what they need, especially after being told no over and over and over again. We didn’t want another family to have to go through all of that. We knew that somewhere, someone needed a voice, a chair, a switch, a safe device so they could simply use the bathroom with privacy. It’s difficult to see her things. It’s difficult to go through them, but it is even more torturous to think that we may have something sitting in the garage, gathering dust, that could make an impact on someone’s daily life.”
The Deadmonds could have sold the equipment, but this family knows people who need it are usually fighting to survive to their next paycheck. Caregivers can’t leave home because of their child’s condition and many have frequent hospital stays.
“Shelbi’s goal in her short life was to help other people,” she said. “That’s what we want to carry forward, the message we want to share. About her. Not us.”