BELOIT— Keyonah Spencer, 14, can bedazzle you with her eyes and whip up gifts with a slight tilt of the head.
Although the witty ninth grader at Milton High School is unable to move most of her body on her own, she uses her eyes to communicate including the occasional eye roll at any incoming “dad jokes.” By moving her head slightly to the left she can select letters via a clicker attached to a computer device to write essays for school or make art for her fans.
With limitations to travel due to being wheelchair-bound and having a ventilator and feeding tube, her family is working to raise money to rent an RV to usher Keyonah safely to Walt Disney World Resort in Florida on Nov. 5. It would mark her first vacation since a Make a Wish Foundation trip when she was 5 years old. Keyonah fondly remembers the Disney characters signing a special book and seeing the Lion King show years ago.
The trip will be costly with the RV rental and nurse needed to accompany the family. People can make donations to make the trip possible at any Advia Credit Union for “Kindness for Keyonah,” or at a GoFundMe page at https://gofund.me/1226e3ee titled “Keyonah’s Miracle Birthday Wish."
Her birthday is Dec. 8.
Although Keyonah never asks for much, she started asking about Disney World a few years ago.
Her family pledged to take her on a return tour. ‘Team Keyonah’ is ready to board the RV and will include an entourage of mom Jenni Lunsford, dad Joseph Lunsford, brother Tayte Lunsford, 6, sister Indie Lunsford, 3, and sister Angelique Spencer, 20, of Janesville along with Keyonah’s grandparents in Beloit, Keith and Gloria Hughes. The crew also plans to visit the dolphins at SeaWorld.
“It would mean so much for her to have that wish again. It’s been about three to four years of asking. We were shy about asking for help,” mom Jenni Lunsford said.
“Every day is a miracle for her, and we want to make sure she gets the desires she has. Every day is a gift. We don’t know what tomorrow brings,” dad Joseph Lunsford said.
Spencer’s unique condition doesn’t have a diagnosis. Her parents explained she has a neuromuscular disorder similar to spinal muscular atrophy. She had a gene mutation which presented when she was only a few months old. Although Keyonah used a walker for a time and could talk, her condition worsened as her body grew. Two years ago she lost the ability to speak.
Today, she must have regular nursing care. She must be repositioned every few hours and get regular breathing treatments.
To communicate she blinks once for ‘yes,’ shakes her head for no and can move her lips slightly for different letters to spell out words. To do her school work she can move her head to activate a clicker on the left which selects letters.
“She writes papers. She texts friends and does what she wants with her computer. It takes her extra long to do her homework,” her mother said.
Although it’s become more difficult to mouth letters, she seems to have created a special language between her and her mother and those who care for her.
“She will show you what she needs,” her mom said.
While she can’t show much emotion in the way of a smile, she is fiercely expressive with her eyes and a tiny lip wiggle can light up a room. She might not be able to eat a traditional meal, but isn’t shy about licking ice cream or chips. While her speech is limited, her communication is robust. Her parents said it can even be a bit sarcastic.
Keyonah loves to give insight to her mom and dad about cooking and can do arts and crafts. For Christmas gifts she made 25 paint-by-number pictures using her clicker and computer for different family members, which her family made into magnets. She loves visiting craft stores.
“She and her nurse have a Cricut Maker and they make T-shirts for people,” her mother said.
Keyonah signed up and was accepted to the National Honor Society.
“She’s amazing,” her grandma Gloria Hughes said.
Keyonah hopes to study business, and use her penchant for organization in her future. Whenever she gets bags of crayons, markers or craft supplies she must get them separated into sacks by color. She also has her own ideas on how stores can best restock their shelves.
“She loves sorting, organizing and being in charge,” her mother said.
One thing Keyonah doesn’t like to do is watch TV.
“She doesn’t love movies. She would rather be outside, working in the garage, shopping or going to Menards or Dollar Tree with dad,” her mom said.
Keyonah’s father works for the Veterans Administration as a counselor for veterans in Madison and her mother is a physical therapist assistant at area nursing homes in Janesville.