“Ty” the Knot

I am Ty’s Grandfather

I am Raising funds for Ty’s Medical Needs and Travel

Ty Walter Gietzen was born via scheduled c-section on June 30, 2023, in Dickinson, ND, to his parents Megan and Jared. Ty weighed 5lbs-13oz, was 20 inches long, and had a beautiful head of dark brown hair. Megan and Jared couldn’t wait to hear the first beautiful cry from their newborn son. They were anxious and excited to bring baby brother Ty home to his two sisters and become a family of five.

However, to their surprise and heartbreak, those long anticipated cries were not heard following Ty's delivery as any parent's worst fear unfolded before their eyes. Ty required immediate medical intervention and respiratory support as doctor's tried to determine what was happening. While Megan was still in the recovery unit, Jared was informed that Ty would need to be flown to Bismarck for observation in the neonatal intensive care unit (NICU). Ty was clearly struggling to support his own breathing and showed very poor muscle tone and overall weakness. Ty was intubated and placed on a mechanical ventilator prior to his emergency flight to St. Alexius Hospital for evaluation and treatment. Ty showed some improvement after just a few days in the NICU by moving from a ventilator to a positive pressure nasal cannula, began to move his arms and legs slightly, and even opened his beautiful, bright eyes for his scared parents. But despite those improvements, Ty was still unable to support his own breathing, swallow effectively, or increase his physical activity after a month of intensive care. After a difficult 38 days in Bismarck and after undergoing dozens of diagnostic tests and countless lab draws to discover the possible causes of his ongoing issues, Ty took the second flight of his young life to Sanford Hospital NICU in Fargo, for additional specialized care. After only a few days in Fargo, the long-awaited results of earlier genetic laboratory testing became available and revealed the devastating diagnosis of X-linked Centronuclear Myopathy. The specific diagnosis is an extremely rare, progressive muscle disease that causes low muscle tone and weakness, respiratory distress, and eventual respiratory failure. The disease is unable to be reversed or treated; but respiratory support and physical therapy can assist in symptom management.

Ty's proud and loving parents are finally able to share that after nearly two months of hospitalization, Ty will be coming home to his sisters very soon and their entire family will begin the next stage of their difficult journey together. Although the future remains uncertain, doctors speculate that based upon the early onset of symptoms and the eventual progression of the disease, the terrible likelihood exists that Ty's time with his family on Earth will be shorter than any family should ever have to consider. Ty will require 24/7 in-home care and attention, inevitably creating a significant financial burden for the family on top of the physical and emotional toll this has taken. Megan will not likely be able to return to work for the foreseeable future as she plans to assume the role of Ty's main care provider. Jared, along with Ty's loving sisters, will look to meet the rest of Ty's needs at home for as long as possible.

Megan and Jared want to be able to focus on Ty’s needs to give him the most beautiful life possible. Ty is a blessing beyond words and has already impacted the lives of so many people. God chose Megan and Jared as Ty’s parents because He knew Ty would become part of the most loving family imaginable. Jared and Megan know that they are not alone, having already received so much love and accommodation from family, close friends, and colleagues over the last two months. But as they embark on the next stage of their unimaginable journey, Community support will be important to meet their obligations during this difficult time. In an effort to assist the Gietzen family, this page is being created to allow others to follow their journey and offer any support they may wish to offer.