Like any first time parents, Kristen and Randy were so excited to be giving birth to a beautiful new boy. On February 15, 2011 they got everything they had hoped for. Benjamin Ryan was born and he was a beautiful addition to their new family. But something was wrong. When he was born he did not cry or move very much. He would not eat, open his eyes or make noises. It was very confusing as doctors were just reassuring them that sometimes this happens and to give him 24 hours to perk up. After 1 day with no improvement, he was sent up to Primary Children’s Hospital in Salt Lake City, UT. Numerous tests were run by the genetics team and when baby Ben was a week old, they came to the conclusion that he had a genetic disorder called neonatal NKH. It stands for Non-Ketotic Hyperglycinemia.
NKH is a severe and rare disorder affecting about one in every 60,000 live births. The condition impairs nervous tissue, including the brain, leading to such symptoms as seizures, breathing and feeding difficulties, muscle limpness, and lethargy. Unfortunately, the condition is not currently curable, and to this point has always been fatal.
The disorder is triggered by abnormally high amounts of glycine. Glycine is a normal substance in the body, but at elevated levels it can cause significant medical problems. It will affect the baby’s brain to where it can no longer send the correct signals to the body, and in turn, will continue to produce too much glycine. Glycine tests were taken on baby Ben, and they discovered his glycine levels were 4 times higher than an average adult and that he would soon pass away. Kristen and Randy were able to take Ben home and enjoy his sweet spirit. After 10 short days of life, Benjamin Ryan Woodbury passed away.
After the passing of Ben, Kristen and Randy began learning about the disorder that so suddenly took the life of their sweet baby. NKH is passed down via a mutated gene. In order for the baby to be affected by this disorder both parents must be carriers of the recessive mutated gene. Learning that both Kristen and Randy carried the recessive e gene, they were told that with every pregnancy, they would have a 25% chance that the baby would have NKH and detection isn’t possible for them until after delivery.
In October of 2012, they were blessed with their now, almost two year old daughter, Ellie. She has been such a joy in everyone’s life! A true miracle and answer to many prayers.
In April of 2014, Kristen and Randy announced the exciting news to the family that they were expecting. Everyone was so excited for the new addition to their beautiful family. Knowing there was a 25% chance for NKH, we remained faithful that they would still have a healthy, beautiful baby!
On October 1st 2014, Kate Woodbury was born and she was beautiful. She didn’t cry much when she was born, but let out a few squeals and seemed to be a lot more active than her brother. With the family’s medical past, she was placed in the NICU to have tests conducted. Little Kate would not eat and was given a feeding tube. She didn’t open her eyes much, but seemed to be very active, responsive to touch and even had working reflexes (things that Ben did not have).
Kate had such a sweet spirit. You couldn’t help but be happy when you held her. We remained faithful that little Kate would pull through whatever seemed to be wrong. A few days later, the glycine tests came in… they were 4-5 times higher than the average adult, almost exactly the same as Ben’s were. We were heartbroken.
Sweet baby Kate slowly started showing more signs of NKH. She became very peaceful, and passed away at home just 5 days after birth. In the short amount of time she was here, she touched many hearts. She was a beautiful blessing to Kristen and Randy and will forever touch their lives, as well as everyone around her.
Through this trial, Kristen and Randy have shown incredible amounts of strength and faith. They are such an example to everyone of allowing your trials to make you stronger and to bring you closer to Christ. The prayers that have been offered in their behalf, along with the healing powers of the atonement of Jesus Christ, have been felt, not just by them, but by their extended family as well. We want to express our sincere appreciation for all that has been done to help them during this heartbreaking time in our lives.
Please show your love and support by donating to help them with the hospital and funeral expenses. We greatly appreciate the outpouring of love during this very difficult time.
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