Two Family Members with the Same Diagnosis, but Good Days is Here to Help
Sarah was told she had Urea Cycle Disorder at a young age. But when she was 12 years old she had been adopted into a family that informed her otherwise. When she thinks back to her teen years, she remembers on and off sickness.
“I suspected something wasn’t right, but I did my best to go about living my life,” says Sarah.
Eventually Sarah learned that she did in fact suffer from UCD, a metabolic condition that makes it difficult for her body to convert nitrogen into urea. Highly toxic ammonia could accumulate in her blood and result in irreversible damage or even death. Two weeks after her son Maverick was born, Sarah learned that he was affected by UCD too.
“Every time Maverick gets sick, I get very scared. His ammonia levels can go up extremely fast,” says Sarah. “Several times we had to go to the ICU to make sure he was okay because there is no way to check his ammonia levels at home.”
Sarah must manage her and Maverick’s health carefully and a UCD diagnosis requires frequent trips for hospital checkups. Faced with an hour and a half car ride to the hospital for each visit, she needed reliable travel resources but did not know where to turn. Then, earlier this year, Sarah found out that Good Days offers travel assistance programs for UCD patients to help cover the costs of transportation or lodging. She is more than grateful they received approval for assistance.
“It was a really difficult time for me. I had just found out I was pregnant with my second child and had also lost my job,” says Sarah. “When I speak on the phone with everyone at Good Days they are wonderful, very kind and generous. They take the time to get to know you and you can tell that they truly care about people.”
Sarah and Maverick, who turns nine this November, recently welcomed the arrival of his little sister. These days, Maverick is doing especially great.
“He is reads at a level several years above his age and loves the Captain Underpants book series,” says Sarah. “He loves school work and loves to read. He is the happiest kid ever. We will be forever grateful for Good Days’ help, I hope everyone knows that.”