Western Nebraska Observer - Observations all along the line - Kimball & the Southern Panhandle First

By Daria Anderson-Faden
The Observer 

RAYAH'S STORY CONTINUES

Kimball Toddler Reaches Second Birthday Despite Diagnosis

 

November 4, 2021

Daria Anderson-Faden

Rayah Dye and her big sister, Braelynn, share a nice moment just days before the little one's special birthday party this weekend.

Not many people, let alone children, have endured what 2-year-old Rayah Dye has dealt with over her short life. A big Happy 2nd Birthday to the most amazing baby around. The special birthday party will have cow prints, and the birthday theme is "Moo, Moo Rayah's turning 2."

Rayah was born with a rare chromosomal deficiency known as Wolf-Hirschhorn syndrome. Wolf-Hirschhorn affects one in 50,000 babies. Rayah weighed 3 pounds, 13 ounces, when she was born, and immediately she was put in hospice care because they had been told that she "would never live."

Rayah outsmarted the doctors and everyone else as she celebrates her second birthday this week on Nov. 3.

The birthday girl has eight teeth, weighs 15 pounds, and is 30 inches long with dark curly hair and piercing blue eyes. She coos and makes noises but is still in Size 1 diapers. She likes to be held and to cuddle, and loves watching the Itsy Bitsy Spider on the big screen TV.

Eventually, Rayah will use sign language, but as for now, she is learning and trying to master the signs for "more" and "all done."

According to Rayah's mom, Rayah is "thankful, happy" and absolutely deserves a chance.

Rayah picked the right family to become a member of. They love her, encourage her, and enjoy her. Her cheering section includes Mom Tiffani, Dad Broc, and big sister Braelynn. Tiffani's mom is the number one babysitter; as Tiffani said, "My Mom knows how to do everything."

After a challenging Year 1, Year 2 of Rayah's life began with stomach surgery to fix a twisted bowel, and they have been pleased with the results as she doesn't throw up as much, and it has helped her with the constipation.

The family was able to experience a vacation in June with a trip to Lake Havasu. Tiffani said, "It was a good summer."

The Dye family attended an amazing BBQ in July of 12 Colorado families with a Wolf-Hirschhorn child; they call themselves The Wolf Pack. Every year, The Wolf Pack meets for a BBQ and day of relaxation and sharing at a home in Greeley.

The Dye family have made lifelong friends with The Wolf Pack. Two Wolf-Hirschhorn children from the pack will be attending Rayah's party on Saturday.

Last winter, Rayah "did real" good; she was able to fight off viruses because she was given a $1,200 a month shot to prevent RSV as well as other viruses. Unfortunately, Medicaid did not allow Rayah to receive the shot beginning this fall because she was almost 2. Rayah has spent the last month fighting off RSV and the common cold.

Tiffani said the last few weeks have been extremely hard because her husband has been on the road hauling cattle, and she has had very little sleep while Rayah has been sick.

"She just can't fight things off," Tiffani said.

It is hard because Tiffani is home alone with both girls while Broc drives a cattle truck throughout the surrounding states. He tries to be home for the weekends. When he is home, he is a hands-on dad and is emotional support for Tiffani during the week.

While trying to stay on top of the RSV, Rayah has been to five different doctors and was put on a steroid. She is finally recovering.

As a strong and determined mother, Tiffani stays on top of her conditions and rattles off medical terms and medications like a practicing doctor.

Tiffani said, "I had to learn and absorb a lot of information in the last two years. I learned a lot of things." She has also learned to be "very persistent" and to fight for what Rayah needs. She said she is kind of hard-headed" and strong willed – and those qualities have come in handy.

Big sister Braelynn, now a kindergartener, is considered mom's "right-hand man."

"I can ask Braelynn to go get me a list of the stuff needed" for Rayah, and she can do it, the mother said. "She likes to help make her milk and help push her medicine in. She just knows a lot more than a normal 5-year-old."

Although Rayah doesn't recognize other kids, she knows her big sister.

Tiffani said, "Braelynn is so awesome to Rayah." She said they will put Rayah's hearing aids in, and "Braelynn will play songs, sing to her, and she likes to hold her."

Braelynn told her mom, "My sister is perfect to me."

Rayah will have a feeding tube for the "rest of her life" due to her cleft palate, and because of her sleep apnea she will always use oxygen at night and of course when she is sick.

In September, the doctors figured out why Rayah's head tilts off to one side. Her C-1 and C-2 vertebrae are misformed as well as many of the bones on her left side.

Daria Anderson-Faden

Since her last birthday, Rayah has been fitted with little pink glasses, but because of her head tilt, she can't keep them on, although contacts are in her future. Rayah has permanent hearing loss and was fitted with hearing aids, which makes listening to Itsy Bitsy Spider much better.

Over the past year, "reality has set in" as a small medical equipment center goes with them whenever they go anywhere. It includes a suction machine, feeding tube machine, oxygen tanks, a special chair, and a special stroller. Reality also can come at a moment's notice. Tiffani knows Rayah needs specialized care and heads to Denver.

In the beginning, Tiffani said, "You are scared to love them."

But the family has gotten over worrying about what everyone thinks. Now they consider it is a privilege to have Rayah and be able to raise her.

Happy Birthday, Rayah!

 
 

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