Submitted by Carrie Gheith, Zakky’s Mom
Zakariya “Zakky” Gheith was born in Feb. 2013 and is now 7 years old. When he was diagnosed with a benign brain tumor (optic pathway glioma) at 4 ½ months old, we didn’t think he would make it to a year old. God and the army of support that followed proved us wrong.
After a tumor debulking in 2014 and 4-5 (I’ve honestly lost count) different chemo treatments, Zakky’s tumor finally stabilized and has not grown since October 2018. With that said, Zakky’s tumor debulking was not without its risks and he suffered a mild stroke and additional brain damage that created other medical problems he had to endure. He developed partial seizures which thankfully we have gotten under control with medication. After his debulking, he developed a sodium irregularity called “SIADH” (syndrome of inappropriate antidiuretic hormone secretion) where we had to restrict the amount of fluid he could take in to keep his sodium level stable. Then, about a year later, his body transitioned from SIADH to diabetes insipidus (DI) where he was not able to retain fluid to keep his sodium stable. Both of these sodium issues require ongoing sodium level checks, which we have had to do anywhere from multiple times a week to once a month depending on his level of stability at his pediatrician or cancer treatment clinic.
Caring for a medically fragile child who is visually impaired with global delays and non-ambulatory at home would be impossible if not for the home nursing services and multiple home medical equipment to help us. We are so thankful for all the assistance we get to keep our Zakky safe and stable at home with us.
Zakky’s endocrinologist reach out to the Raymond A. Wood Foundation and described Zakky as a delightful 7 year old who had two admissions in the last one month for serious life threatening hyponatremia (sodium as low as 120 mmol/L) which caused seizures and intensive care management. Zakky Gheith received a blood analyzer last week to help his family manage his diabetes insipidus.
To support this and other initiatives to mitigate the side effects of brain tumors, please support the Raymond A. Wood Foundation.