The ALSF CORD Fund

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Malia Heck

At 2 years of age, Malia began experiencing symptoms of abdominal pain, which became increasingly debilitating keeping her from playing and being the happy smiling child she once was. Months later Malia began walking hunched over at times and was waking multiple times a night, crying in pain. Finally, Malia was diagnosed with an intramedullary astrocytoma, a tumor within her spinal cord. Despite two surgeries within 10 months, surgeons were unable to remove the entire tumor.

Because the tumor cells had infiltrated the tissues of the spinal cord, full removal would have resulted in neurological damage ranging anywhere from minor sensory loss to major paralysis. Radiation, although the gold standard of treatment, came with potentially devastating consequences for a young child. Although chemotherapy had not proven to be very effective on this type of tumor, Malia received a 12-month chemo-therapy regimen, prescribed as a measure to inhibit further growth of the remaining tumor.

Despite the prognosis of likely recurrence, Malia is presently enjoying remission from the tumor. With the exception of MRI scans every 24 months, life seems quite normal for Malia and our family.

Malia is now 13 years old. She is displaying no symptoms of her disease at this time, so her life is much like that of any other teenage girl. Malia is an eighth grader. She enjoys playing soccer, horseback riding and being with her friends. She looks forward to attending high school next fall.

Written by, Dan and Kara Heck, Malia’s Parents