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Royalty D.

What it means to be Royalty.

When we think of royalty, we think of beauty and grace, princesses and crowns. They’re set apart, special, and rare.

When I think of Royalty Daniels, I think of the same.

For the first three years of her life, Royalty was all that you would imagine a happy, silly toddler to be. With two older siblings, Robert (now 13) and Karmin (now 8), she settled into her role as the baby of the family in true princess fashion.

And while she was already special, an ultra-rare diagnosis was about to truly set her apart.

Just after her third birthday, Royalty began to show signs of epilepsy (seizures) and autism. She lost some of her prior abilities like walking, talking, and even eating. One morning, she woke up and was unable to hold herself up anymore. Not long after that, Royalty began vomiting after every meal, and eventually, couldn’t eat food by mouth at all.

Her mom, Tytchiana, was mystified and anxious to identify what might be happening to her daughter. But as she drove Royalty to countless appointments, endured never-ending tests and scans, and met with some of the most skilled and knowledgeable physicians in the country, she was met with more questions than answers. 

For more than a year, Royalty silently regressed. Finally, specialists unlocked the key to her diagnosis, and it was nothing anyone could have expected. She is the only person in the world known to have it today.

Royalty has cerebral folate transport deficiency, a disorder that develops from a shortage of vitamin B9 in the brain. Little is known about its long-term effects because only Royalty can tell us that, but researchers expect affected children to have normal development during infancy and begin to lose previously acquired motor skills around the age of two. They might develop intellectual disabilities, speech difficulties, and recurrent seizures, and some will require the use of a wheelchair.

Affected individuals also have leukodystrophy, which is a loss of brain tissue known as white matter. Without treatment, neurological problems would worsen over time. 

Royalty was given no prognosis or life expectancy, and only she could determine what life would look like for someone with her diagnosis. Four years later, that’s exactly what she’s doing.

Royalty requires the use of a wheelchair and relies on a feeding tube for nutrition, but she’s also making impressive strides. She can stand and cruise on furniture and is relearning her previous abilities. There’s one catch, though: With every sickness, cold, or fever, she tends to regress in any one of these areas. It’s a fickle condition, and she’s constantly toeing the line. 

“Even though Royalty lost so many abilities and faced many hardships, she has never given up and continues to keep a smile on her face,” said her mom, Tytchiana.

“She has intense therapies each week and works so hard to regain movement,” she continued. “If she stops those therapies, a lot of progress is lost.”

Their lives have completely changed in the last few years, in every way possible. Tytchiana isn’t just caring for Royalty, either. She has two other children who need her time, attention, and care. But she’s been juggling it all at an expert level, including shuttling Royalty to numerous therapy and doctor appointments each week. 

That is until 2022 when her car blew up.

And yes, you read that right. Tytchiana was driving her SUV and main source of transportation one day when it randomly caught on fire. That's the actual photo of it above. Miraculously, her children were not in the car with her and she was unharmed.

“After, I learned that squirrels from our neighborhood had chewed up wires in the car,” she told us.

It was such a small thing with huge ramifications.

Without their only mode of transportation, Tytchiana had no idea how she would transport her kids to school or activities, let alone get Royalty to her weekly appointments. To add to the pressure, she knew that every missed therapy session could cause Royalty to regress.

Thankfully, the Division of Specialized Care for Children (DSCC) knew of Chive Charities and the impact made possible by our donors for families like the Daniels’. They encouraged Tytchiana to apply for a wheelchair-accessible van, and through the support of our Chive Charities donor family, we were able to approve them for a 2019 Chrysler Pacifica for a total impact of $55,000.

Our princess had her carriage.

“This van will help my family so much, including getting Royalty back and forth to appointments, therapy, and school, and will provide the stability that was lost during the accident,” Tytchiana said. 

“We’re also going to store it in the garage now,” she laughed.

Take that, squirrels.

Our Royalty deserves her happily ever after. And because of Chive Charities and people like you, she can continue to set her own pace and dictate what her life will look like. Transportation is one less thing standing in her way.

To all of the fairy godparents out there - our donors and supporters - thanks for all you’ve done for Royalty. If you want to help make a wish come true for another family like theirs, we invite you to join our organization as a Bronze, Silver, Green, or Platinum donor. We decree the world shall be 10% happier. Let it be so and DONATE HERE.

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