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If you spend time at Children’s Hospital Colorado, most likely you know my son, Truett Rosenlund. He is a happy 2-year-old, and he is “undiagnosed.” He has a rare, unknown, neuromuscular disease that has left him paralyzed from the neck down with nerve damage, and requires a tracheostomy with a ventilator and oxygen to breathe.
Doctors at Children’s Colorado are still searching for answers to Truett’s rare, undiagnosed disease.
We visit Children’s Colorado at least once every two weeks for doctor visits, breathing problems, or blood transfusions. You can’t miss us. If you look past the heavy wheelchair and the many machines of medical equipment we have strapped to Truett’s chair and our backs, you will see the huge smile on our son’s face. It’s the flirtatious smiles and eyebrow raises that everyone remembers about my blond-haired, blue-eyed, little angel. I live for the moments when he sticks out the tip of his tongue, as it means he is extremely happy. I chuckle at the eye rolling he gives me when I baby him around his friends.
For 787 days, and counting, we have been trying to find out what caused Truett’s nerve damage…what rare disease does Truett have? We have met with the top pediatric neurologists and geneticists in Colorado, as well as multiple top neurologists along the East Coast of the United States. Children’s Colorado performed every commercially available genetic test during Truett’s eight months in the ICU. Truett even had whole gene exome testing on his DNA, and no known genetic disease was found.
My husband and I have had genetic testing done as well, but it did not provide an answer. Does Truett have a rare genetic disease, or is this a rare illness that he acquired after birth? I feel an overwhelming urge to figure this out and to get a diagnosis for Truett. With a diagnosis would come the hope of a cure or treatment, insurance coverage and clinical trials. It would provide a prognosis of what to expect for symptoms, quality of life and life expectancy. It would give us guidance for future family planning and symptoms to watch for in our healthy 5-year-old daughter.
This rare disease has affected every member of our family. Truett has 10 rehabilitative therapies at home each week, and around-the-clock home nursing. However, many times my husband and I are Truett’s sole caregivers. Truett can’t move, so we must move and stretch his body every two hours. We must provide airway clearance and life-saving breathing for him. My husband and I have literally saved our son’s life more times than we can remember or count on both hands.
Our daughter often doesn’t get to do the activities we have planned, and she cries because her brother can’t play with her like her friend’s siblings do. It has been stressful on our marriage and financially difficult at times. But, given everything, I feel blessed and lucky to be Truett’s mom. At only 29 pounds, he is the strongest and most courageous person I know. He has taught me what is important in life. I now appreciate the small things. I have learned to have hope when life seems impossible. And, I am doing everything I can to help Truett while paving the path for the next family to walk in our shoes.