Our Inspiration

Jayda Amani Anderson (May 4, 2008 - November 17, 2012)

Jayda was born with a rare chromosome disorder called Chromosome 18 q deletion syndrome; a rare chromosomal anomaly where there is a deletion of part of the long arm of chromosome 18. Associated symptoms and findings vary widely, as do their severity. In addition she had Ventricular Septal Defect (VSD) and Atrial Septal Defect (ASD). The combination of these elements complicated her chromosomal findings. We remain grateful for the amazing care she received from her pediatric cardiologist Dr Shabib Alhadheri of Phoenix Children’s Hospital.

VSD is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Also referred to as a “hole” in the heart. Many cases resolve on there on, others require medication or surgery. Due to the severity of her VSD she was put on diuretics to reduce the amount of fluid in circulation. After six weeks of being closely monitored by an array of specialty physicians it was determined that the best solution for long term health would be to perform open heart surgery.

At a fragile 9lbs 6oz, Jayda recovered well. For the next couple of years she would meet with Dr Alhaderi monthly for routine follow-ups to monitor her condition and check for any signs of complications.

In September 2010, Jayda developed a fever with no correlation to her known diagnoses. After multiple hospitalizations and series of test she was diagnosed with Undifferentiated Juvenile Idiopathic Arthritis(JIA); an auto immune disease which means the body’s defense system mistakes its own cells as foreign bodies and attacks them. Because the disease is characterized by pain and swelling in the joints Jayda became immobile. The treatment plan for JIA included Physical therapy, biologic injections, NSAIDs (anti-inflammatory drugs) and analgesics (pain reliever). A shock to all, Jayda began to thrive and do well with her treatment for JIA.

In March of 2011, Jayda had a routine cardiology appointment. The nurse began her routine of checking vitals, performing an EKG; a recording or display of a persons heartbeat and prepared her for an Echocardiogram; ultrasound of the heart. The findings were devastating; Jayda was diagnosed with Congestive Heart Failure, she was put on a strict follow up schedule with her pediatric cardiologist and a plethora of medications were given for maintenance.

Although her family was sadden by the finding, Jayda continued to be happy and was full of life. Her strength was admirable. The courage she possessed gave those around her hope for the future.

Unfortunately, on November 17, 2012 Jayda Amani Anderson passed away.

She is truly missed.