At eight months of age Darcey Papineau became sick with a cold and flu. Over the course of several days she became more lethargic, difficult to feed, and developed a cough. Out of concern that she was not showing any signs of improvement, her parents took her to their local hospital to have her examined on November 11, 2015. Upon entering the hospital emergency department, with those bright lights, it was a shock to see how jaundiced she had become. Due to difficulties getting a blood sample, Darcey was sent to a local regional health centre with a pediatric department and over the next several hours blood tests were run and repeated. With no answers in sight, on November 13, 2015 she was transferred to The Children’s Hospital at London Health Sciences Centre. Upon arrival, things went quickly as Darcey was assessed without delay and a barrage of tests were conducted. As medical staff began to ask questions, her parents began to recall odd bruising that had occurred with their daughter in the weeks prior, another symptom indicating that her blood counts were low. After what felt like an eternity of not knowing, her parents were informed that Darcey had an ultra-rare disease called atypical Hemolytic Uremic Syndrome (aHUS). The relief came when they were also informed that this disease was treatable. Numerous blood transfusions took place, as well as several days of plasmapherisis during the course of the two weeks that followed. It was hoped that these initial treatments were going to be enough to put her into remission and she was discharged from hospital. Less than five days later, Darcey’s blood counts began to drop and her symptoms began to return. She was readmitted to hospital and after five days of plasma infusion and no signs of improvement, it was determined that she would be put on an indefinite treatment called eculizumab (Soliris). Her parents were shocked to learn however, that this drug would not be covered by OHIP. It was unimaginable to hear that a treatment existed for their daughter but there was no possible way her parents could afford to provide it for her.
Watching the illness consume her little body as fluid was retained, affecting her lungs and breathing, as well as the impact this disease was having on her kidney function, was a helpless feeling. With the support of an amazing medical team, funding was eventually secured to allow the infusions to start and within hours of her first treatment, Darcey began to show signs of improvement. To be able to see this little baby become more energetic and happy was a wonderful relief. Darcey was discharged from the hospital on December 17, 2015 just in time to celebrate her first Christmas with her big brother and the rest of her immediate family.
It has been confirmed that Darcey is the youngest patient in Canada to receive this drug and while she is more fortunate than most Canadians to be receiving treatment for aHUS, there is still a lot of work that needs to be done. Darcey’s family is committed to doing what they need to do to help advocate and raise awareness so that others who are facing this illness can gain access to the treatment they require.
The Papineau family shared their story with their local paper The Post on Jan.20, 2016: http://ow.ly/Equr304bYvi
Thank you to the Papineau family for sharing Darceys story. If you are interested in sharing your story of how aHUS has impacted your life, please contact us at firstname.lastname@example.org.