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Finding time to pursue my dreams as a mother and caregiver

Caring for my 7-year-old son, Juju, who has late-infantile Batten disease (CLN2 disease), is a journey filled with challenges and emotional ups and downs. As a mother, the responsibilities can sometimes feel overwhelming, but I constantly remind myself that I am more than just a caregiver. In this column,…

How to have a strong marriage in a rare disease family

In today’s fast-paced world, maintaining a strong and healthy marriage can be challenging. It’s even more difficult when the complexities of raising children with medical conditions are added to the mix. Our daughter, Serenity, battles a heart defect known as pulmonary atresia, and our son, Juju, has…

How stability helps parents of children with chronic illness

Raising two children with rare health conditions has presented me with a multitude of obstacles to overcome. Juju, my 7-year-old son, battles Batten disease (specifically, CLN2 disease), while my 1-month-old daughter, Serenity, has pulmonary atresia, a congenital heart defect. By sharing my experiences, I hope to bring attention…