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SALK Day 35 – Foundation for Children with aHUS

When I first announced Sponsor A Law Kid, the first person to sponsor a day was Crystal Ferreira, one of my high school classmates.  She asked me to share part of her family’s story and to promote the Foundation for Children with Atypical HUS.

Atypical Hemolytic-uremic Syndrome (aHUS) is a syndrome where red blood cell break apart and the cell fragments create clots in the kidneys which cause severe anemia and kidney failure.   The disease usually presents with persistent flu-like symptoms, lethargy, and loss of appetite.  Blood tests show shattered red blood cells, and low platelet counts, a definite sign of aHUS.  Patients frequently have recurring problems with the disease including kidney failure, seizures, neurological problems, high blood pressure, lack of response to supportive treatment, and a return of symptoms even after kidney transplant.

Atypical HUS is a rare complicated disease with only 300-600 cases in the United States and is most common in young children.  The syndrome is not well understood, has no standard treatment and no cure.  The best treatment is to closely monitor the disease, provide supportive treatment to control blood pressure and minimize kidney damage to kidneys though plasma and blood transfusions.

Photo courtesy of the Ferreira Family

Crystal’s son, Christopher, was diagnosed with aHUS in August 2009, just four days before he was supposed to start first grade.  He spent 31 days in Children’s Hospital Oakland.  He has since had at least one relapse.  The family claims to be managing decently, but they’re really doing an amazing job planning around potential relapses and making their son’s life as happy as possible.  Christopher loves being outdoors, playing soccer and baseball, riding his bike, and especially loves riding his four-wheeler.  The family recognizes that these times are valuable and limited.  Crystal said hearing his laughter is a reminder that children are resilient despite how hard these illnesses try to bring them down.

The Foundation for Children with Atypical HUS raises monies for medical research to find better treatments of a cure, provides information and support materials to parents of children who are suffering from the disease, and works to increase public awareness by educating our medical community about the disease.   Please visit their website to make a donation to this worthy cause.  

Sponsor A Law Kid is my endeavor to pay for my last semester of law school. Today’s sponsor is the Ferreira family. For more information about Sponsor A Law Kid or to see what days are still available for sponsorship, visit my Sponsor A Law Kid page.

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