Local family’s time in limbo ends with official diagnosis for ailing daughter
After nearly a year-and-a-half wondering why their young daughter was sick, the Washburn family finally has an answer.
Doctors at Children’s Hospital in Denver recently diagnosed Lucy Washburn, who turned two years old in June, with a rare disease called atypical hemolytic uremic syndrome. It’s a treatable disease, but still very serious. Nevertheless, her family gets at least a little bit of relief now there’s an actual diagnosis.
“It is a huge relief to have a diagnosis,” said Brad Washburn, Lucy’s father. “It is not a good diagnosis, but at least it is treatable. She can live a normal life with it.”
Lucy Washburn was first hospitalized when she had difficulty breathing just three months after she was born. She went on to spend the next three months at Children’s Hospital with ongoing complications related to her kidneys. After another three months, she was released but despite her ongoing medical issues doctors at Children’s were not able to diagnosis her condition.
For a little more than a year, Washburn remained at home with her family. While concerns about her condition lingered, she experienced no new episodes that required hospitalization until this April when she was re-admitted to Children’s Hospital. She remained there, more or less continuously, for the next seven weeks.
After her first hospitalization, Washburn received a blood transfusion. Follow-up blood tests showed Lucy had low platelet and red blood cell counts. This revelation led doctors to diagnose Lucy with atypical hemolytic uremic syndrome, more commonly referred to as aHUS.
“Diagnosing Lucy mostly humbled all of us as we saw so many things wrong with her but still couldn’t pinpoint a real diagnosis for the longest time,” said Dr. Jens Goebel, section head for pediatric nephrology at Children’s Hospital. “But then, when we finally recognized the atypical HUS piece and started treatment, it was really rewarding and cool to see Lucy respond and get better.”
aHUS is rare, affecting about one in 500,000 people. According to the aHUS Foundation, when a person has aHUS the walls of their blood vessels can become clogged with platelets. So, when the body is filtering blood, those platelets are clotting up the kidney function. aHUS is caused by one of the proteins in a person’s blood working incorrectly, according to the foundation.
For the Washburn family, the diagnosis has led to a roller coaster of emotions.
Cynthia Washburn, Lucy’s mother, said she is happy they found something, at least now knowing the name of what her young daughter is facing.
“But there is a concern that we don’t know what will happen in the future,” she admitted.
Cynthia Washburn said her family is slowly getting back into a basic life routine, which includes trips to Children’s Hospital every two weeks for infusions of a drug called Eculizumab. Each treatment of the drug costs $25,000, which, thankfully for the Washburns, is covered by Medicare. The Washburns also highlighted the immense financial and emotional support they have received from Horizons Specialized Services, a northwestern Colorado-based nonprofit.
Overall, Lucy is doing pretty well, her family said. She attends daycare one day a week and continues to develop. Her second birthday party was held at the Washburn family home in June.
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