Baby laughing while being held.

Fighting a diagnosis with Hope & Family at the Ronald McDonald House

Kane’s Fight Against NKH

The birth of your first child is one no parent will ever forget. In the blink of an eye, your world changes. Suddenly, you care about nothing more than the tiny human staring back at you. Within their eyes, you can see all the hopes, dreams and memories you will share together throughout your lives.

On September 28, 2017, Dalton and Madison felt these exact emotions when their beautiful son, Kane, was born. At eight pounds, one ounce, he appeared to be perfectly healthy. The new family of three was happy and ready to start their lives together; however, after several days of non-responsiveness, very little eating and a multitude of tests, Kane was diagnosed with a very rare genetic disorder called Non-Ketotic Hyperglycinemia (NKH) or Glycine Encephalopathy.

NKH is a disease that typically presents itself in the first weeks of life. Symptoms include low muscle tone, excessive sleeping, wandering eye movements, abnormal jerking movements and difficulty feeding or breathing. Then, multiple seizures begin to appear and ventilator support is needed for apnea to prevent the infant from slipping into a coma. With approximately 1 in 76,000 babies diagnosed with this disease, there is not much known about how to fight NHK.

Cook Children’s has only seen two NKH cases in the last 10 years.

With news like this, one could imagine Dalton and Madison would have immediately given up hope on finding a cure for Kane; however, they have done the exact opposite! Instead, they are fighting this disease head on. With appointments at Cook Children’s, Children’s Hospital in Dallas and contact with the country’s leading NKH specialist in Denver. The new family of three and their fierce bumble bee pack of families, friends and NHK supporters are staying strong one day at a time. Dalton saying, “I will never give up HOPE.”

The NKH symbol and mascot is a bumble bee. According to the rules of aerodynamics, they are not supposed to be able to fly, because their bodies are too heavy for their little wings; however, a bumble bee does not know that they are not meant to fly – so they just keep flying!

While the last months have been a blur for the family, they have found some comfort within the Ronald McDonald House of Fort Worth. Dalton wrote this sweet message about our House:

“The people at the Ronald McDonald House in Fort Worth are some of the most selfless, loving, and caring people we’ve ever met. They gave us a “home-away-from-home”, within walking distance of the hospital. The House and the volunteers keep the kitchen pantries stocked with donated groceries and meals so none of the families have to worry about food and all those extra expenses. They did everything they possibly could to make us feel comfortable and loved during the longest and most difficult days we’ve ever been through. They’ve gone out of their way to make sure we knew we weren’t alone. They have been family.”

If you would like to learn more about NKH and support Kane in his fight, please visit his Facebook page: Kane Wyatt’s Fight Against NKH, @KaneWyattEdwards.