RAYAH'S STORY

At 3 pounds, 13 ounces, the tiny newborn Rayah Dye was sent home from a Denver hospital on hospice. Rayah's mom, Tiffani, said the medical personnel repeatedly told her and her husband that Rayah "would never live" and therefore "we were not prepared to bring her home at all."

They had no car seat, no clothes for the baby, no diapers, not even a blanket. Tiffani admits that emotionally "they had completely detached themselves from her," but that wouldn't last.

Hospice wasn't a total surprise to her parents, Tiffani and Broc Dye from Kimball, because even before she was born they were told they needed to make funeral plans for the unborn baby. So sure of the sad outcome, Tiffani and Broc did not even tell their 3 year-old that Mom was going to have a baby. Contrary to all the medical opinions, Rayah did survive and on Nov. 3, 2020, she and her family will celebrate her very first birthday. Even after a long and difficult year, Tiffani said, "We are just grateful she is here."

Rayah has a very rare chromosomal deficiency, known as Wolf-Hirschhorn syndrome or in medical terms, 4p-, which affects 1 in 50,000 babies. Although a chromosomal deficiency, parental genetic testing found no abnormalities with the parents which is usually the case with Wolf-Hirschhorn syndrome.

Tiffani said it best: "It is just something that happened when sperm and egg came together; she didn't get it all, she just didn't get all the DNA."

While pregnant with Rayah, the doctor noticed that the baby was ultra small. Eventually they were sent to Denver for some genetic testing. At 27 weeks, the devastating results from the amniocentesis were relayed to Tiffani via phone from a genetics counselor and a new chapter in their lives was started. Tiffani said that nothing in life can prepare a person for news of that magnitude.

After bringing Rayah home, Tiffani said, "We were on edge for the first three weeks. They didn't recommend any medication. It isn't like we knew, we were just doing what they told us. She did need medication because of the hole in her heart. She needed a diuretic to keep the fluid off her lungs."

The first three weeks were difficult.

"I didn't know if I was going to wake up to a dead baby, "Tiffani explained.

Rayah has lived a rather exceptional life already. When she was 3 weeks old, according to Tiffani, she coded, "she had passed away, she was gray" on the kitchen table in her home in Kimball. Tiffani's mother revived and stimulated her chest.

With oxygen from the ambulance, they immediately took off for Children's Hospital in Denver. After a two week stay and a new diagnosis, she was no longer on hospice. At Children's Hospital, Rayah was put on oxygen, a feeding tube and diuretic medication to clear the secretions from her lungs.

At 5 months old, Rayah endured open-heart surgery and in addition has had two spinal MRIs. In the near future she will be undergoing surgery to fix her cleft palate.

According to Tiffani, Rayah weighs in at 14 pounds now and is a very happy little baby but very quiet. She is beginning to smile more and more and trying to hold her head up. Soon she will have glasses to take in more of the world and they are excited to see how that goes.

Although Rayah still needs full assistance to hold her head up, she kicks and is trying to bring her hands and arms up, and it appears that she is trying to roll to her side, according to Tiffani.

Big sister Braelynn is a typical 4-year old, and Rayah loves her sister. Besides recognizing her sister and watching her, Rayah recognizes, of course Mom, Dad and her grandparents.

As flu and cold season begins, the family is concerned for respiratory issues. Rayah receives in-home therapy where they are working on her strength, as she gets stronger she will be able to move the secretions away from her lungs thus averting pneumonia.

Tiffani is excited about the fundraiser that the Eagles Auxiliary is organizing for Nov. 1 mostly because it will raise awareness of conditions like Wolf-Hirschhorn syndrome and perhaps people will realize "that it can happen to anyone and it is OK to have a kid that is mentality challenged." The spaghetti supper will be at the Eagles Lodge from 5-7 pm on Sunday.

Over the past year, it has been comforting and helpful for the Dye family to meet other families with the same syndrome and the same problems. They also have been fortunate to find support groups.

Locally, the family has found outstanding support and encouragement within the Kimball Volunteer Fire Department. Broc is a volunteer fireman, while Tiffani is president of the auxiliary.

As for now, daily life goes on for the Dye family, Broc drives a truck for Horizon Logistics, Braelynn attends pre-school, Rayah gets stronger, and together with mom they continue to "fight battles and you fight and fight and fight" and "it is worth it," Tiffani explains.

It is impossible not to admire the strength, fortitude and determination of the Dye family.

"Things are thrown at you," Tiffani said. "You just have to roll with it. We roll with it everyday."