Cinderella has her slippers. Belle has her books. Ali Najera has her letters.
Princess Ali, as she prefers to be called, is an effervescent 9-year-old from Jasper who is obsessed with Disney princesses. Ali got her letters and her unofficial title after she was diagnosed with a rare neurological disease just after her eighth birthday.
On a recent morning at Sandy Creek Park in Jasper, Ali colored on a sheet a of paper placed atop a picnic table. Brothers David, 6, and Michael, 2, ran around the nearby playground, horsing around and exchanging chatter with other children enjoying the swings and slides.
Ali, who is almost always confined to a wheelchair, didn’t let that detail keep her from having a good time.
The bubbly girl in her colorful and self-expressive wardrobe showed off her countless bracelets and strings of necklaces.
Ali usually colors or builds sand castles at the park. She’s pretty content with those two activities, as long as Michael doesn’t get too rough on her colored pencils.
A few minutes into her time at the park and Ali’s stepdad showed up with a box of letters.
She greeted him with a toothy smile.
As Bobby Morgan stretched out the box in Ali’s direction, she fumbled with her hands, uncertain which letter to open first.
The letters are from random strangers, but it’s not a random act.
Ali’s mom, Tianna Morgan, asked her what she wanted for her birthday this year.
The Morgans made the request via Ali’s facebook page, “Princess Ali’s Journey with NBIA” and set up a P.O. box.
Bobby is now a frequent face at the Jasper Post Office – some days making two stops to pick up Ali’s haul.
With days still remaining until her Sept. 9 birthday, Tianna said Ali has already received more than 1,000 letters and small gifts from around the world.
Tianna said it’s important for Ali to enjoy this 10th birthday.
“In a year, she might not even know what a birthday card is,” she said.
Ali’s official diagnoses is PLA2G6-Associated Neurodegeneration (PLAN), a form of Neurodegeneration with Brain Iron Accumulation (NBIA). In simple terms, Ali has iron building on the base of her brain which is caused by the mutated gene, PLA2G6.
Tianna said she first noticed that at 2 years old Ali stumbled when she walked and couldn’t control her blinking.
Doctors said she was fine. A lot of toddlers have trouble walking steady, Tianna recalled.
Ali had regular annual check-ups and doctors never had any suspicions that something was wrong until 2010, two months before her sixth birthday.
Tianna said Ali’s doctor said the girl had weak hips possibly caused by autism or cerebral palsy, but he couldn’t give a firm diagnosis.
In 2011, the family got a referral to Texas Children’s Hospital.
Doctors there also suspected Ali had cerebral palsy or autism, Tianna said.
So in 2012, they did an MRI to find out what was causing the issue and that’s when they found the iron on her brain.
The form of PLAN affecting Ali is called neuroaxonal dystrophy, which can start in early childhood or began in someone’s second decade of life, according to the NBIA Disorders Association.
The symptoms can resemble autism, but little more is known because of a lack of research, according to the association.
Tianna only knows what she’s learned from other families through online support groups.
Ali went from walking without any assistance to becoming an almost full-time wheelchair user 10 months after the diagnosis, Tianna said.
So the family of seven made some changes. They added rails to their home and Tianna decided not to go back to work after receiving her paralegal degree.
“I feel it’s more important to be available to Ali than it is for me to go back to work,” she said.
The family has a GoFundMe account and a friend is trying to set up an online benefit for Ali’s medical expenses.
“It feels very strange asking for money,” Tianna said.
The letters have been a welcome and fun distraction from Ali’s diagnoses.
Tianna makes frequent posts online, mapping out where the letters are from and from which countries and states Ali has yet to receive a letter.
But the letters can’t be opened too quickly or Ali will get overwhelmed, Tianna said.
Obsessive compulsive disorder and anxiety are side effects of the iron pressing on her brain, she said.
So the letters are placed in a large bin, waiting to be read.
The big bin of letters is somewhat coveted by Ali’s little brothers.
“I think everything is Ali’s,” David said at the park. “Every card we get is Ali’s.”
The brother and sister got their very first piece of mail ever from their grandma, giving Ali the idea to ask for letters and cards for her birthday.
“Their faces just lit up when they got mail,” Tianna said.
David is still hopeful he’ll finally get a second piece of mail among all of Ali’s thousands of letters.
Until then, Ali shares her letters and lets her little brother read them out loud, correcting him where he stumbles and reminding him to read the sender’s full first and last name.
Letters and birthday cards can be sent to:
P.O. Box 2586
Jasper, Texas 75951